Desperate Carer needing advice please

I have posted online here a few times but things have come to a head and I need to know what to do so we don’t keep going round in circles please. I had some time off work for Xmas so I was around more for my Mum who has Vascular Dementia. I got up early, fed her cats and medicated them, cleaned their trays and kitchen. Fed Mum a lunch and then went to see my partner who has ASD. Was able to spend a few hours a day with him (whiich helped him greatly) before coming home and sorting dinner for Mum.

All was fine until I went back to work. Since then Mum has smashed plates right next to me, become obsessed with the house being clean so much so she wanted to throw everything away. She has verbally threatened my life. Thrown bottles of water on the floor which hit me a couple of times as I was trying to clear up. Constantly screams for help all through the night and day. Has said that she wants to put the cats outside (they are indoor cats and would last 2 minutes) as the council put them there and changed all her furniture without her permission, There was nothing I could do to settle her. She smashed a glass lamp and used it to try and break a window and opened the front door to scream at passers by including chldren on their way back from school. I, and my neighbours, have called the police but they were limited in what they could do.

2 days ago she wet the bed again (this has been happening over the last few nights) so I changed her bed before I went to work but she was screaming out of her bedroom window as I left. Neighbours called the police who came and called me and asked to attend. I refused as I was at work so they called the Care company who sent someone over then the police left. The Carer felt scared for her safety as Mum smashed a plate of food across the room so she called her Manager who also attended. The Manager has now said she wll not send any more Carers unless there are two at a time which Mum will not pay for so the care company has withdrawn care.

The GP does not understand why anyone should be scared of a small frail old lady and is treating her for a UTI despite not being able to obtain a sample as Mum refused to be examined. Mum initially refused the antibiotics but took 1 last evening. She has not been eating although food is prepared for her and was so weak last night that she was unable to leave the sofa to go to bed. She starting screaming at around 10pm because she needed a wee but could not get up. I tried everything but I have a torn rotator cuff and am unable to lift her plus anything “down there” makes me feel very uncomfortable.

She wanted a nurse (I swear she truly believes she is not at home anymore) so I said she should call 999 and then I left the home (please don’t judge me, I am desperate, plus I have been told that as long as I am there, not much can be done). She was admitted last night but the hospital wanted to discharge her today until I had a call with hospital social services and they are now admitting her purely because there is not a suitable package of care in place.

What can I do? I’ve explained everythng to anyone who will listen - hospital social services, GP (beyond useless), my social worker (who says it’s up to the GP), CMHT (who have discharged her). I am at a loss. I have a call booked with hospital social services on Monday and need to know what to say or do. I am currently back at home but terrified she might be discharged at any time. The cats are settled with me here. Without me they would not last the week as by taking only a day and night away made them very poorly. Please, I need advice and thank you and sorry for the long post.

So sorry you’re stuck in this mess.
I assume you live with your Mum?
I think you’ve hit the nail on the head when you say that as long as you’re there , they won’t do anything, but it sounds like you couldn’t move out because of the cats, or could you take them with you?

At the meeting I would ask for your Mum to be reviewed by the on call Psychiatrist.
Tell the staff on the ward that that’s what you want to happen, and that you won’t be at home if they discharge Mum without a care package that’s appropriate for her needs.
Also check whether they’ve managed to get her to take anymore of the antibiotics. If they really think she has a UTI and won’t take the med’s, then they may consider sectioning her,especially given the behaviour you’ve described, ie she’s a danger o herself and others, but I really don’t know for sure.
Do you think she needs to be looked after in residential care? Clearly you can’t carry on like this. By the sound of it she doesn’t have capacity to make decisions about where she lives or what care she needs, and she doesn’t sound like she’d be safe to be left on her own for anything more than an hour or so?

You have all of my sympathy. Police are very against arresting elderly people even when they are a danger to themselves and others. But I have been told that if they constantly get called out they will expedite SS involvement.

I also agree that whilst you are involved, the authorities wont act. But you just cannot go on like this. Could you see another GPF? Write a letter cc to a Solicitor stressing the Surgery have a ‘Duty of Care’ to your mother and to yourself? It often feels a crisis has to happen before any help is given to the desperate family carer.

I do know it is very hard to get someone sectioned but in this case it seems the only safe option. I wonder if you could find a specialist solicitor who could advise?

With regard to the indoor cats, you have my sympathy as mine are indoor and I often lock the younger ones in the bedrooms when I go out in case husband does not close the door properly if we have a delivery. This has to come to a head soon and one option might be to put them in a cattery for a few days. I totally agree they would have no road sense and my heart goes to you over this.

The Admiral nurses are very good if your mother has dementia re advice and I think they can intervene with the GP? But it is a nightmare to get through. Also would a local Carers group offer support? Sometimes the befriender can push the issue upwards if they think the person involved is at breaking point or the person being cared for is a danger to themselves and others.

Hopefully you will get more ideas but please stay strong. It is totally wrong how family carers get treated like ‘cannon fodder’ by the authorities…

If your Mum is confused and aggressive when the Police arrive the only option available is to take her to a place of safety. That would be very likely to make things worse and she would certainly become dangerously agitated in the confines of a car.

But although she appears to be making decisions and they are being accepted by the medics, I don’t think they’ve tested her mental capacity to make decisions. This is important because a mental capacity test determines whether the decision is grounded in going through the process or an impulsive, irrational reaction. This is not to say that making a bad decision is a sign of a lack of mental capacity, or we’d have a new Prime Minister by now :laughing: :laughing: :wink:

But if it is determined that your Mum does not have mental capacity, then you can involve medics and social services to make decisions in her best interests. This could introduce two care workers, for example. Or something else. It depends on the circumstances. But it is worth looking into.

For your own safety, next time this happens, call an ambulance and the police as well.
She is clearly mentally unwell and needs some treatment.
At the moment she is a danger to you, and anyone else who is around.
I’m worried about what she will do next.

Make sure you have a lock on your door, or if not, a good wedge to go under the door so she cannot open it when she is in a rage.
Record what she says on your phone, in your pocket if neccessary.
Someone needs to take action now.

Can you move in with your partner on a temporary basis. And let Social services know that your mum is on her own now? Then I guess she will have to go into a care home to be looked after 24/7.
Please put yourself first - you are in danger living like this. You need to get out before you get badly hurt.

Thank you for all your advice. Seems like Mum does not have a UTI or at least they are not treating her for one. Mum is still in hospital but has been transferred to another ward. They say they will not discharge her without a suitable package of care if she comes home or there is talk of a placement but they say Mum is medically fit for discharge.

I visited her a couple of nights ago and there was very little grasp of real time. She has very much regressed to her past and is confusing what is happening now with what was happening in her childhood e.g she knows where she lives but she thinks the timeline is back to her childhood during the Spanish Civil War. She said that she didn’t feel safe at home as people were being killed on the street which is something she witnessed at a young age.

I have been strong and said to SS and the ward that I will not be at home (Mum’s home) for the majority of the day and evening so it is risky to leave her alone for such a long period of time. I have also expressed where my red lines are, that I will shop, prepare food and stay overnight but I will not get involved in personal care or anything that would involve lifting.

Been ringing in every day to find out how Mum is and am told she does not wish to leave her bed so worried that she may be bed bound if she is discharged home which I cannot cope with.

I am at her home (and my home) right now as am looking after the cats. They are 17 years old and cannot be rehomed and if I leave it would be a house share or rental so would not be able to take them with me, The cats have been so calm and relaxed this past week and their appetite has increased (they eat more that me!)). I cannot live with my partner as he has ASD and needs his own space plus with everything that has been going on, he attempted to take his own life last weekend as it was all too much for him.

I have inisisted that Mum goes to respite for 4 weeks and receives dementia and anit-depressant medication and is monitored for those 4 weeks in a safe environment. If, then, there is improvement to come home with a care package. I don’t know how much more loudly I can voice this but I so worried that I am still not heard.

My mum’s hospital tried to bully me into sending her back to her own house, on her own, almost immobile.
They told me when the hospital bed was being delivered.
I did not go over to let it in.
Very cross Ward Sister rang me. Why didn’t I let it in?
I told her mum wasn’t fit for discharge.
Sister said she knew mum had a front door key in her purse at the hospital, and if neccessary she would go to mum’s house herself and let it in.
I told her that it was only for one front door, but mum had two front doors, inner and outer.
From then on I would lock BOTH DOORS - I had both keys in case of emergency.
Sister VERY cross when I told her that.
Several days later I had a phone call from the hospital, to say mum very ill.
So much for being “fit for discharge”.
It’s all so, so horrible. However, I knew mum better than anyone else, i knew she was ill, and unfit for discharge.

We have a key safe and have been advised to change the number or remove the key. Have been a bit worried about doing so as I live here too. This is my home albeit it’s my Mum’s house. If they can’t get in then would they take Mum back to hospital? If Mum is so immobile I would not be able to cope even part time. I feel like my only option is to leave but I will not leave the cats on their own while Mum is in hosiptal plus I have already tried leaving (for 6 months) and SS convinced me to move back in although now Mum is worse than she was before.

Consider changing the locks, then tell the hospital.
Ask for a Continuing Healthcare Assessment so you have her true needs in writing.
Even consider reporting the nurse bullying you to the nurses registration body. Ask for her full name.
You have a right not to care.If mum owns the house, do NOT move out!
If mum becomes a permanent care home resident, while you are living there as your only home it’s value should not be considered as part of a financial assessment.

Oh my goodness, I did not realise that!! That is such helpful advice, thank you! I thought the cut off for that though was 50 years old and I am 49 (50 in August)? I think it might be enough to change the key safe number to something no one would think of or maybe take the key out. No one else has a key other than me. I am absolutely desperate for Mum to go into a care home for both her wellbeing and mine. I have asked the hospital SS to put their reports to me in writing but they will not. In fairness my SS worker seems ok but says he is hamstrung as to what he can do whilst Mum is in hospital as she is under their SS. I have an advocate allocated to me who is back in on Monday so will speak with her asap. Hospital have said the discharge team work Mon to Fri between 9am and 3pm so hoping nothing will happen before then, Thank you and appreciate everyone’s advice. Am totally on my own other than this forum.

Talk to the helpline about the situation about the rules concerning when the house is and isn’t considered. It’s quite complicated, and has never applied to me, so I’m only going by what I’ve read at various times.
One set of regulations has a cut off date of 60, however this is not apparently a hard and fast rule. As I understand it, If selling the house would make you homeless, then the house should not be considered.
Then there are rules about deferred payments, when the council do take the value into consideration, but put a “charge” on the house, and they reclaim what they paid as fees after someone dies.
Then IF mum was eligible for NHS Continuing Healthcare it would all be entirely free!

Go round the house and gather together all the financial paperwork, and draw up some sort of financial statement detailing all income and expenditure, and especially savings.
Then try to work out how long it would be before mum runs out of money.

It’s easiest to do your calculations on a weekly basis as then the figures involved are relatively small.
For example, if mum had a pension of £100 a week and benefits of £100 a week, that’s an income of £200 a week.
If the home cost £800 a week, with an income of £200 a week, that means her savings would go down by £600 a week
£800 fees less income of £200 gives a sum of £600 going from her savings.

Hope that helps.
By the time mum was in care, I had the support of a very kind counsellor. Very helpful.

Whatever you do, DON’T remove the key or change the keysafe code!

Mum has a right to enter her own home. And it would automatically put you in the wrong.

However, I would take the approach that the 4 week placement in respite you’re talking about be used to assess just exactly what she can do and can’t - and her mental capacity. 4-6 weeks is about right for that and will give a much clearer idea of what you’re dealing with.

I did that with my Mum because I was becoming increasingly certain she couldn’t manage at home. She’s now happily placed in a care home and although that was a wrench for me, she’s safe and generally happy. And I’m no longer getting 4am calls from the careline because she’s had a fall.

In my mum’s case she did not want to come home, to be left alone for 22 hours, expected to poo in a nappy and sit in her mess for hours. She had capacity and everything I did was with her knowledge and approval.

It’s more difficult if someone doesn’t have capacity, but in those circumstances if someone has POA, their decision should be respected.
If no one has POA, then there should be a best interests meeting with all concerned attending.

If hospital staff are resorting to bullying, they need reporting.

I would bypass the Ward staff and Social workers and call the hospital switchboard and ask to speak to the Manager or Matron for whichever directorate she’s under the care of (ie elderly medicine, general medicine) You could also find out who her consultant is and ask switchboard to put you through to their secretary and say you want an appointment to speak to him urgently.
The hospital will have access to an on call Psychiatrist for the elderly. Tell the directorate manager, Matron and Consultant that unless she’s had an assessment you won’t be allowing her into the family home , FOR YOUR OWN AND HER SAFETY.
Your Mum doesn’t have the capacity to make decisions about her own needs and safety, and the hospital aren’t making the correct decisions for her, so , in that case it’s up to you to make those decisions for her. It’s known as acting in someone’s best interest.
Whilst she’s in the hospital or the ambulance she remains the responsibility of the NHS and they’d have to take her back to the hospital.
Have a look at this if you have time

IMO due to her mental health condition,your Mum has severe functional impairment which is beyond being able to be managed at home.
They’ve set aside extra funding to allow people with mental health issues to be discharge safely from acute care here

Update. So Mum is still in hospital and refusing all personal care. I understand that they are either waiting for a suitable package of care (home visit 4 times a day) or an interim placement for assessment and the placement is their preferred option. It does seem to be moving in the right direction if I can take what the Discharge co-ordinator said to me as true.

I did change the key safe number purely because so many people have it and I am at home on my own but the key is in there so someone only needs to call me for the new code. I know Mum’s finances and she has enough in the bank for a care home for about a year or so before the house would be taken into consideration.

I have been phoning in daily to see how she is but am loathe to visit as last time I did (last week) they suddenly changed from interim placement to immediate discharge home and I had to fight to get that changed. The guilt is overwhelming though.

I had to limit my visits to see mum in hospital as they assumed that if I could visit, I could care for mum at home!
They never asked if this was possible, in fact my GP has said I should NEVER care for anyone ever again.

Surely if your mum won’t accept even cooperate with staff in hospital it shows how impossible her care would be at home???