Ever decreasing circles

Hi
Hope I qualify for this site - I have posted on here before for advice but mum is in a care home so I am still responsible and heavily involved in her care though I wish I wasn’t. There I’ve said it. Its very much out of duty now. I want to be in a situation where I can do kind practical things and help mum but it just isn’t possible, whatever I do isn’t enough, in fact not only isn’t enough but is of no use at all and I’m tired. My blood pressure is through the roof despite medication, my anxiety is awful despite medication and I’m making mistakes at work - only small, unimportant ones but still.

I feel a bit mean saying this but its anonymous so… My mum has always been quite a difficult person - I suspect now paranoid personality disorder - she has always been suspicious and distrustful of people and I bore the brunt of it as a child (I was an only child). She divorced when I was very young and cut off all contact so I was always either whipping boy or expected to soothe her anxieties and boost her mood.

Anyway, about 20 years ago her paranoia ramped up and she started thinking she was going to be arrested, and misnterpreting innocent actions as evidence of this. She couldn’t say why or how she believed this and consulted various solicitors who were unable to help her as there was nothing to go on. At this time she was living in a lovely house, was comfortably off, took early retirement and in good health so it really was not circumstantial. She was treated for depression and anxiety eventually but after a couple of overdoses was admitted to a psychiatric unit where she was diagnosed with Delusional Disorder.

Over the years her paranoia began to include all sorts of things - any minor damage and I do mean minor that most people wouldn’t notice such as a lose thread on a towel were attributed to people coming in the house and doing things to torment her. There are so many things that I can’t even list them all in this post but aside from this she could have intelligent conversation and manage daily life fine.

During lockdown things became worse and after lockdown she shut down any social contact such as going to hairdressers and for massages and turned on the few friends she had. She is and still is under the care of a mental health team and was prescribed anti psychotics which never seemed to work. More recently she started falling and having brittle bones has hurt herself and started losing everything - purse, keys etc but blaming it on people coming into the house and hiding them. It also became apparent she wasn’t able to manage her money - forgetting her pin number - losing her bank cards etc (although this was blamed on the people who came into her house changing her pin).

She also became more agitated and would ring me up to ten times day and night, complaining about being persecuted by imaginary people and I could never talk her down. She also began hallucinating - for example she saw rats everywhere to the point she got the rat catcher out who said one must have come and gone. They were never mentioned again. She also said she saw someone hiding behind the curtains who ran off.

She also stopped eating properly. When she was unable to go out due to risk of falls I got her shopping for her and she could never say what she needed or when she needed it. She was very resistant to any help or ideas or suggestions to make her life easier or more comfortable. Eventually she was allocated a social worker but before she could put anything in place she took another overdose and was admitted to hospital.She was in hospital for 4 months being assessed by a social worker. She also wouldn’t provide any evidence for a financial assessment, saying she had no money and the house wasn’t hers (I think she really believed this as one of her delusions was that she shouldn’t spend any money and that people were moving furniture into her house at night).

I noticed she was losing her memory but put it down to being in hospital. I got married just before she moved into a care home but with great difficulty and the help of a few people we got her dressed up and to the wedding ceromony. Shortly before I got married (about 2 weeks) the social worker rang me and told me I needed to find a care home for my mum and a lot of nonsense about how they couldn’t help with that or pay in the interim - at that time I was still waiting for the LPA. Ultimately they did because when I returned from honeymoon mun was in a care home and seemed quite happy. Breathe sigh of relief. The only issue being an elderly uncle was in town for the wedding and made to sign up to pay for top up fees which I’m still trying to sort out for him.

The relief didn’t last long as shortly afterwards mum fell again and this time broke her hip. Back to hospital. I wasn’t sure whether she was going to go to a rehabilitation place or back to the care home and although I asked the discharge nurse to ring me she never did. In the end mum was discharged to her care home which she hates and her paranoia is back in full force. She is accusing the staff of locking people in the cellar, bullying her, not providing any meals (she was having her dinner when we first arrived which she promptly forgot about because 10 minutes later she said they were getting dinner ready).

I have wondered whether mum should be moved to another care home - this isn’t one I chose. I’ve been busy getting all the informtion for a financial assessment, not easy as mum can’t/won’t give any information and has accounts at several institutions I’ve had to register with. I also work full time. I’ve been away for a couple of weeks visiting mum in law and then going to my daughter’s graduation. Now my husband has Covid so not been able to go this week but got an angry phone call from mum saying shes was being bullied in the care home and I’m no help, accusing me of spending all her money going abroad and she can’t trust me and wants to revoke the LPA as she can’t trust me. That was it. She was ringing from the office at the care home as although I bought her a new phone when she moved in she promptly lost it and to be honest I don’t think she knows how to use it anymore. I know she’s ill and can’t help it but how long is this going to go on for and how much do I have to put up with. Its really affecting me mentally.

Much as I feel like shutting off and not doing anything anymore I know that isn’t an option and I’m conflicted as she is my mum so part of me still cares and feels sad. I didn’t mention but during one of her overdoses she accused me of beating her up and the police had to investigate so I’ve put up with a lot as well as this latest drama. I’d be happy to look for another home - a lot of the residents seem to have advanced dementia so its a bit weird but then that also leads me to question - would the same thing happen no matter what? When she was living alone imaginary people were bullying her. I also wonder now if she might have dementia - I think some of her symptoms have been passed off as part of her psychiatric condition or lack of stimulation from hospital but the falls, memory loss, hallucinations are fairly recent too.

Well, thank you if you’ve perservered reading this and I realise what I am going through is nothing compared to a lot of you but it has certainly helped me get this all down!

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Hi @DaisyJo No comparisons here - everyone’s situation is different and difficult to deal with. And yes - you’re definitely a carer.

Your mum sounds as if she’s at a point where, even if she wanted to revoke the LPA, she wouldn’t have capacity to do so. Which is why the LPA is in place. It’s very possible she has a form of dementia, but equally there are some mental illnesses that can cause similar deterioration, but the care home, as you say, has a lot of people with dementia there, so it seems to me that they’re treating her that way anyway. Which is a good thing, because they’ll be used to the sort of outbursts you’re mum’s suffering with.

You’ve had years of this, and from your description it seems that she’s basically got worse every year, more paranoid, more difficult to deal with and to support…and you’ve carried on supporting her anyway. Be proud of what you’ve done, but step back a moment. Would moving mum make it better for her? If she’s confused and struggling, and has memory issues, moving her might cause more distress and make things worse. And it could take months for her to get used to the new place. Is it worth it? Or will it make things worse?

This is a really difficult situation. There were times when my late mum would phone at 2am to drop in an accusation about something that hadn’t happened, or to ask when we were fetching the kids (the youngest was 35 at the time) she thought she was babysitting. One call was about distraction burglars stealing drugs from the medicine locker. Except they were very cute puppies, apparently. Never did get to the bottom of that one!

There’s no timescale for any of this. All I can suggest is that you step back as much as you can and only do what needs to be done. Give yourself some time. You’ve earned it - and then some.

Who was demanding top ups?! This is unlawful!

Tell Social Services and/or health that mum is clearly a danger to herself and there will be no more money until an NHS Continuing Healthcare assessment has been completed. Look this up via Google. Free care, but it may take a while.
If you now have Power of Attorney, send a copy to mum’s bank and then her bank statement will help you unravel her financial affairs.
Then concentrate on securing her home, tell her insurance company she isn’t living there, empty the fridge etc and remove valuables for safe keeping.
Do you live near her house?
For different reasons, my own mum was in and out of hospital for years. It’s very stressful.
It is time for you to draw a line under your dreadful past life and enjoy your future. Turn your answerphone on, and take control, to stop the calls. Tell everyone that in future they must communicate by email, then you have evidence of who says what, where and when.

Hi

Thank you both for not only reading but replying. Your insights are helpful and I guess I was reaching out to be heard as much as anything.

I have shut myself off in the sense I no longer expect any sort of good outcomes for mum - she is in a safe place, can no longer overdose when things aren’t the way she wants and no longer rings me asking me to get her an ambulance or just telling me crazy stories about imaginary people or real people she thought were plotting against her. Big improvement.

As for the financial stuff I continue to sort as there isn’t anyone else to take it on and yes she doesn’t have capacity even to take any steps towards trying to revoke my attornyship. I am only waiting for several sets of financial statements and then will have all the things social services need for their assessment. That is important because although mum will be self funding she doesn’t have a life shortening illness and her money will run out within the next two years.

At the moment social services are paying as I only recently got the LPA - I applied for it in the nick of time when I could see there was no alternative as mum wasn’t co-operating with requests for financial information for hep when she was home. Once the assessment is done I can get a proper contract with the care home and make sure I’m happy with the T&Cs. I won’t agree to any top up fees and I don’t think they’ll ask. I know the top up fees are unlawful and are down to a really bad social worker we had at the time and me not being there. I’ve done what I can but ultimately my uncle will have to pursue further as its in his name. I suspect he won’t fight it much and will just pay it but that is up to him ultimately.

I’ve got other stuff to do but mainly house things - it is secured as much as can with valuables removed and fridge cleared etc. There are some bits to do in it but mainly the garden and I’ll sell it. There’s a bit of work to do and it does seem very one step forward two back at tines but it must get sorted eventually!!!

@Charles I’ve gone over and over what might be wrong with her - when does the psychotic illness stop and dementia start. Not clear cut although I did find out since my last post mum was diagnosed with MCI which explains a lot. Not sure if she knows but if she does she never said anything. The care home she is in is geared up for people with her behaviours as you say and there doesn’t seem any point (even aside from the recent accusations) of looking for anywhere else at the moment.

Thanks again for your kind replies!

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