Desperate now - this is going to kill me

[Maz1963]

I posted a while back. My 89 year old mum (who was, and still is, living with me) is now nearly 6 weeks into 'acute confusional state'. She spent three weeks in hospital, but I now have her home. Various people have visited from Social Services, OT and the community Mental Health Team. The Consultant Geriatrician from the team is coming to visit her on Thursday. I am working towards daily carer support, one or two overnight stays by carers a week and then looking at care homes. No one will diagnose dementia yet, but I guess they will ultimately as no one seems to have any clear answers. Maybe I will get one from the consultant on Thursday.

While at home mum has not slept through one night - neither have I. She is calm during the day but as soon as it gets dark she gets delusional, paranoid and hallucinates. Doc has her on Trazedone and now Olanzapine at night, but it's not helping. She wakes up at night shouting, very scared, very delusional, and it's hard to get her back to sleep.

I am on the verge of calling 999 again and having her admitted to hospital, but I have done this twice now and they just don't look after 'mental health' patients on the wards. But where to take someone like this in an emergency? Is there anywhere apart from hospital?

I can't cope with this alone any more. I have no one to help me. Friends and family are far away. The odd neighbour pops in, but what can they do?

Is it possible to get her admitted to a hospital for people with such severe mental issues? Or should I take the 999 route?

This is so awful, it's like one of those very bad dreams, but I can't wake up ...

Has anyone had to deal with something like this before? What did you do? I don't really want to 'give my mum away', but I can't survive this for much longer.

[littlewren]

Hi I didn't want to read and not reply I can feel how desperate you are and I would be aswell, someone on here will know more than me but this is what may work, I would contact your gp community matron, if you have one, I don't know if its throughout the country, anyway you should get emergency respite care because of your mums I'll health, and its making you Ill aswell,this will give you a chance to sort out something permanent, this might be a bit confusing but I wanted to reply quickly, hope this helps a bit best wishes

[jenny lucas]

Well, you can't keep going like this, that's for sure. Having such disturbed nights will wreck you. What is your mother like during the day time, does she sleep then? If so, then I would recommend, at least now, that you sleep too, whenever she does (like when you have a baby in the house!)

But it does sound like she now needs, sadly, specialist dementia care in an appropriate care home where they are skilled and experienced in all aspects of dementia-behaviour.

As for whether she is 'officially' with dementia or not, I can tell you that when I had to move my 91 y/o MIL from her first (non-dementia) care home, to her current dementia-carehome, she hadn't had any 'official' diagnosis, but the care home manager sat her down when we visited and chatted away to her apparently ' casually' and then afterwards reported to me that from the conversation she could see that MIL had substantial dementia, giving me her reasons for saying so, and that was that! She offered her a place and in she went. That said, she is self-funding, so that might make a difference.

If your mum is not self-funding, could you/she still run to say, a fortnight's self-payed respite care in a specialist dementia home, just so that you can get a break and your sanity back while long-term care arrangements are made. I do hope so!

[Juggler]

First of all some big virtual hugs, Maz - you definitely need them. You also need some sleep and support. Make sure you tell all the professionals exactly what you've told us - that you can't function or cope and that you need help now. As LittleWren suggested, ask SS for an emergency respite admission - no, don't just ask, insist on it. You need time to get your strength back. Without it, you can't function. The health professionals are looking towards the future, but you need help now. Unless you tell them you can't do it, they will assume you can.
Jx

[Maz1963]

I posted an update, but it seems to have disappeared. Night was horrendous. Got an ambulance out at 4 am as she had fallen out of bed. They could see what a state I was in, said I need to get urgent help today.

Have spoken to mental health team and a doctor and nurse are going to come at 1030. I really had to push for that though as person on phone was suggesting that someone comes and just give her some more medication.

I am going to try to insist they take her in somewhere.

She's now totally crazy, banging on the windows.

[jenny lucas]

Maz, horrendous though last night must have been, at least now you have things moving on the SS/NHS front, which is essential. Push them as hard as they need to be pushed - it's horrid to have to do that, but in the end, it's what has to happen.

If your poor mum is still 'banging around crazily' then I would also surmise that she has become a potential danger to herself (and possibly even you), and that gives further weight to the imperative that she is 'taken into care' for her own good. She needs specialist care now - she's way beyond what a family carer can manage.

All the very best to you in this grim and distressing and exhausting situation, and I hope that there is a resolution to it today, or tomorrow at least. Then, at last, you'll lbe able to breathe more easily - and catch up on sleep. You'll be 'running on empty' at the momnt, and although that can be done and sustained for a few days, at some point you WILL 'crash', and need to recover your strength and stamina.

Kind wishes, Jenny

[Maz1963]

Psychiatrist and nurse came and assessed mum. Said mum not sectionable, not suitable to take her into 'psychiatric care'. Left, saying they would call shortly to advise what next. Called to say GP would come. He came lunchtime and has recommended re-admission to hospital. He actually said that we can't move on without a diagnosis, and we will only get that by going through the 'system' again. So, now waiting for an ambulance to come and take mum to a GP assessment centre (at a different hospital this time). Stupidly left front door unlocked after docs left and mum managed to step into front driveway in her dressing gown. I tried to pull her back, but she fought me and fell, though she fell against me, so fell 'softly' and just slid to the ground. Mum now lying in front garden. Phoned neighbours, fortunately they were in and helped me to lift her up and take her back inside (just before heavens opened!). Still waiting for ambulance, hope GP didn't forget to order it! Won't try to take mum to hospital myself as I know she will fight me.

The nightmare continues ...

[jenny lucas]

This sounds quite absurd! However, I'm no expert in this area at all, but could you, once your mum is back in hospital for her own safety if nothing else, simply tell the authorities that you REFUSE to have her back again - they HAVE to find somewhere else for her to be. Remember, no one has a legal duty of care, and you are perfectly free to tell them that you will NOT be providing any care for her, and that's that.

Grimly, others here will testify that sometimes until you put your foot down and refuse to have anything to do with care, the authorities will delay and prevaricate.

Wishing you all the best in such an absurd situation.

[jenny lucas]

PS - just a thought, but if they try and send your mum back home again, lock the doors and leave (don't give them a key!).

[Maz1963]

Just left her in A&E and about to try to get my first decent night's sleep in many, many days. Whatever happens in that hospital, I have to stay strong and not bring her home before they reach a conclusion, however long that may take. I still think they are prevaricating over a 'technicality', as I think it's clear to everyone that mum has dementia (even though it came on over 3-4 days and I know that's unusual).

I seemed to be fine until we got into a bay in A&E and started waiting ..... then I suddenly felt like I was about to pass out in a heap on the floor, so I told one of the nurses I was going home and drove home in a haze. Just goes to show the body will go with the 'need', but it is certainly telling me now that I've pushed myself too far!