Hi I am new here - I wasn’t a live in carer but have been responsible for my mum’s care.
I could write a book about my mum’s mental health issues but will keep it short and say she has suffered from a delusional disorder for a very long time (over 20 years) which crept in almost unoticed at first but then increased in severity until it took over her whole life. They are of a persecutory nature so she has depressioh resulting from her delusions and was under the care of a community health team, also on meds but they didn’t work. Lately as well as becoming increasingly physically frail - she is nearly 80 and has very bad arthritis in her hands and lately her balance or lack of it has led to a series of falls so in and out of hospital - family have noticed signs of dementia - memory gaps and increasing confusion which are different from her delusional disorder symptoms. The last few months she has been ricocheting between home and hospital due to falls and taking the wrong amount of medication.
This time in hospital she has been seen by a psychiatric team who believe she needs 24 hour care and have recommended discharging her mum to a care home. I haven’t been able to see mum as the ward has been under lockdown so not sure how much she understands. They do not believe she has mental capacity to make decisions in her best interests on her care and I agree. The last time she was at home it was absolute non stop chaos - she was refusing to go out and not looking after herself and obsessed with looking for “clues” she was going to be evicted from her own home. As sad as it is I agree 24 hour care is the best thing and even if I lived nearer and had more time her being at home would never work due to the complexity of her illnesses (she could well turn on me as a co conspirator as she has with various health care workers and has never been reasured by anything her family say to calm her).
So following my relief comes worry as I know absolutely nothing about the processes or terminology of finding a care home and dealing with social services who will be doing an assessment. My understanding is social services will not be acting in my mum’s best interests so I need to know my stuff. Any advice please on how to choose one - I need a care home which is quality, near enough for me to visit and from which she will not be moved when her money runs out - more on that further along. Where do I even start?!!!
There is some financial difficulty. Mum has been classed as self funding. Not sure how they know this as no one has access to her bank accounts or information. I applied for POA fortunately before she really lost capacity so hoping that will still stand but it could be many weeks before that comes through and even then I’m not sure what I’ll need to do to get access and whether mum will be seeen to have capacity to deal with financial affairs or at least have a say in what happens. One of mum’s delusions was that her money was being siphoned from her bank account, she no longer has control over it and doesn’t get bank statements as she is being sabotaged and someone was stealing her post. She does own her own house (good bye inheritance) so perhaps that is what they base self funding on? Another of her delusions is that she no longer does own it but that is different!!
Anyway as in the title all help and tips for dealing with the powers that be very gratefully received and I will have a browse on this website also
Thanks for reading!
Hi Daisy jo, welcome to the forum. I would talk to the Pals and have a chat with them and see what they can do. You could try citizen advice and speak to the safeguarding team. Try the carer helpline and see what they can offer. I know what it can be like trying to get some sense out of someone. I have had the same troubles with the hospital staff during lock down but they sort of listen in the end when I threaten them with the police as they were mucking around with mum lithium, we only got a stroke of luck when the consultant was looking after both mum and dad ward, dad had a word with her. I would speak to the Pals and see if can get some sort of meeting sort. @Charlesh47, @bowlingbun are good at this advice
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Hi @DaisyJo and welcome. Trying to look after elderly parents from a distance is hard graft. And definitely it makes you a carer!
The social worker’s job is to help you with all this and explain it - even help you through the process.
The Power of Attorney is unlikely to be accepted without a challenge if there’s any suspicion that she lacked capacity at the time: did you go through a solicitor? If so, that would set aside any potential concerns as they have to be satisfied that an individual has capacity before completing the forms.
Basically, yes: the house is considered as part of Mum’s available capital as no one is now living there.
The helpline can help talk you through some of this, or put you in touch with someone more local, perhaps, for support: the telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm (excluding Bank Holidays) or you can contact them by email (advice@carersuk.org). Email is probably best where there’s the sort of information you’ce shared here. Easier to go back to the advice if it’s written down for you!
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BEFORE there is any financial assessment by Social Services, there should be an NHS Continuing Healthcare Assessment, which would mean free care, but it’s not granted easily. If Social Services start bullying you, say that you cannot breach mum’s confidentiality. Google “Charging for Care “ and link at the .gov pages. Is mum getting Attendance Allowance? If not you can become her DWP Appointee and then claim on her behalf. Also search for Funded Nursing Care”. The rate has recently increased to over £200 a week. Do not be in a hurry to empty or sell the house, concentrate on finding the right home. You need an EMI Elderly Mentally Infirm that will commit to looking after mum until she dies, this needs to be her last move. Decide first what area you would like to be in, ie near her old home or your home, then look at the Care Quality Commission for those in the right area, to start with.
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Thank you all so much for taking the time to reply. Very helpful information and a lot to read up on and get to grips with! I never imagined this situation would come about so suddenly. The diagnosed condition of Delusional Disorder is chronic but I didnt believe progressive like it has been the last few months. Various anti psychotics have been tried but make no difference at all.
I do think there is something else - i guess i need to go back to the Psych team and see if they can assess - for a dementia type illness? It is very difficult to get to speak to the doc unfortunately as youll know too well no doubt. Plus i work so cant wait by the phone for a call back. If there is dementia i would rather know though so i can prepare and it could make a difference to the care home I choose.
Anyway thanks again for such useful advice!
Heya.
When it comes to finding a care home start looking online in order to find out. Make some brief summary notes. You are in my prayers too. Good luck.
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It will need to be an EMI (Elderly Mentally Infirm) home.
Make a list of what you need to do, in order of priority.
Maybe a ring binder with a page for section for each issue, ie possible homes.
Ask for everything in writing, then they can’t deny what was said. Keep a note of everyone you speak to, name, rank, phone number, what was agreed.
There should be no attempt to discharge before diagnosis clear.
Thanks all. The more info i get the more questions. Mum wont tell anyone what savings she has /says she has no money but has previosly said to a social worker she has over £23,000 so she’s a self funder It seems. The gov need to take down their misleading site saying the cap was raised in Oct 2023 as it wasnt. I did email the advice line from here but didnt get a reply, not even a “we will answer in xxxx time” so not sure if it works.
It sounds selfish but I do feel resentful she’s sat on money that could have helped her family and will now spend it on something she could have had for free. Same with the house. I have been supporting her financially, just little things but it adds up. Plus Im getting married in a couple of months (first - and last wedding) so need to save. Mum says shes not coming which has upset me as well. Sorry turning into a bit of a rant now!!!
The past couple of months I have had her AA paid into my account but i guess this will now go towards her weekly costs. Also is mum expected to use every penny she has and the house for care costs. I think I saw somewhere she could keep £28.30 a week for personal expenses but this seems very little - how will she buy clothes, shoes, toiletries presents etc although maybe it would work if she spends monthly. Also if she is said to need 24 hour care will she need her AA reassessing as she is only on the lower rate?
Well off to go and visit so will stop there!
I have contacted admin to ask about this.
Whilst you wait for a reply, you might find this information useful, if you haven’t read it already:
Residential care | Carers UK.
and
DEFINITELY get the AA increased as soon as possible. Are you her DWP Appointee.
Please re read my message about Continuing Healthcare etc. which would give mum FREE care if she qualified.
You need to secure mum’s home, remove all valuables to a safe place, and empty the fridge. Tell her house insurer, as it will only be covered for about 30 days!
Then bring all her paperwork together, bin any junk mail, and arrange with the post office to have all mum’s mail to be redirected to your address.
It’s a while since I went through all this for mum, however I’m fairly certain that for the first 12 weeks care charges are based on income only, not assets.
Nearly forgot, make sure you tell the DWP that mum is in hospital, asap.!
Hello, Daisy Jo. You have received some excellent and experienced advice.
Those with less than £23 000 to their name will receive partial funding, and below £14 000 receive full funding. These figures do not seem to have changed for a while. So when Mum’s funds have been used up these figures will apply.
Best wishes on your forthcoming wedding. It is something to look forward to.
My mother was also self-funding when she went into care. This means that you can be selective in choosing a decent care home, as my family was. Those that rely on funding are at a disadvantage and at the mercy of the local authority, which will try to make available funds go as far as possible.
Hello all
Just dropping in again to say thank you for taking the time to reply to me. I have taken the advice on board and will ask the social worker about the NHS funded care and the follow on care - also had a google. The NHS funded care seems very obscure and seems to say there isn’t actually any criteria as such. Mum is elderly and needing personal care now, due to fraility but her main illness is mental health - she was treated for this at home for years without any success. I think she would have continued to be treated for this at home to be honest but for her age now. I have also given the details to the DWP who say they will ring me back. I am used to having to learn complex subject matter at work very quickly but nothing could have prepared me for trying to learn about funding, assessments, and
NHS processes - who to contact for what. I would like to know what tests they have done for mum, outcomes and if they are trying new medication. There is a psychiatrist who is lovely but as you can imagine very hard to contact. I find it so stressful trying to ring and speak to all these people while I’m also trying to hold down a job.
What I didn’t expect was for mum to never leave hospital and want to go straight to a care home. Yes, it is very good that she isn’t going home and better she doesn’t want to go home. I was constantly on edge getting hundreds of phone calls from her, having to call ambulances and always, always worried about her and sometimes resentful too at all the drama she was creating. It was getting to the point of a best interests meeting where mum was going to have to have help at home whether she wanted it or not.
But I can’t believe how sudenly mum has changed her mind and behaves as if home never existed - she doesn’t care what happens to it - I can sell it as long as she doesn’t have to do anything to it. I mean it was until two weeks ago her home with all her things round her and her memories, her books, ornaments, photographs, paintings - all things she doesn’t seem to care about anymore.
I’ve been in floods of tears tonight remembering the past, good and bad memories. But mainly the sad and bad menories - why is that? There were a few as mun’s illness got worse. Now, it really feels as if mum is gone and is just a shell now. I am also guilt tripping - was there more I could have done - her mental illness made it so hard to be round her - it was impossible to even have a conversation as she wanted to focus on her increasingly outlandish beliefs and “evidence” she found to support it. Any attempt to discuss practical stuff was honestly impossible. I wish she hadn’t been ill and I got the chance to do the caring daughter thing and drop round and do the cleaning for her and make a fuss.
I am also a bit overwhelmed with sorting out her house which has come out of the blue. She wasn’t a hoarder or anything but there is so, so much stuff to go through. Everything is a drop in the ocean. I do have time as I can’t sell yet anyway as I don’t have my POA through and now I am worried about it being left empty for so long. Fortunately there is a lovely neighbour who will keep an eye out but an empty house needs maintenance too. And all the time I can’t stop crying
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I know that feeling so well. My parents last moved when I was just 16, everything was precious to mum and she struggled to throw anything away. Mum developed sepsis, went into hospital, lost the use of her legs, and never went home again.
Let the tears flow, the feelings are like a bereavement, so be kind to yourself. Ask your employers for some Carers Leave. Feel free to ask us anything at all, any of us have been in similar situations.