Supported living struggling with my elderly father’s Parkinson’s-related delusions

[NewKidOnTheBlock99]

Hello,

So my dad has Parkinson’s & was diagnosed probably around 12 years ago, he is now 87 and from symptoms I am pretty sure he is stage 4. His primarily affects his mental state (paranoid, hears things at night, had issues with neighbours ‘controlling the lights & recording him’, being following my mi5 etc). He moved into supported living a year ago following a social work assessment with on site carers. This has been a god send for me as dealing with him has been impossible, he has issues with my husband & is convinced I am being abused (I am absolutely not in any way shape or form) - I have a full time job and two small children, I also live an hour and a half away. He wasn’t eating properly, and wasn’t able to take care of himself - whenever I would visit I would have to clear up a lot as he would have constant accidents etc.

The supported living called today to say they are at a loss at what to do with him as he is refusing certain carers (due to the delusions) and effectively they have had enough and what can I do. I have no idea what to do - any advice? He was discharged by social services but I’m thinking potentially call them. He has been pretty mentally abusive towards me over the last year and really impacted my mental health, as bad as it sounds I am loathe to get too involved as I have finally gained some distance from him & still working on the boundary’s - I feel guilty but I just can’t cope with him, I’m also caring for my mum who now lives locally and it’s all too much.

So supported living isn't really set up to deal with the more advanced stages of Parkinson's, particularly if it involves dementia like symptoms. My advice is contact SS and ask for a new care assessment as his needs have clearly changed, contact the GP explaining the issue and look at care home / nursing home options if he is self-funding. You may also need to prep yourself for some emergency care, if the current care staff say they can't manage him.

Worst case scenario is an admission to hospital, where you push for a discharge to assess pathway so that he can be properly assessed and reviewed.

So sorry - this bit is so hard and lonely at times.

Why can’t the supported living do a referral to social services ?
They must see this all the time, when their resident’s needs change surely ?

Sounds very much like Parkinson's with Lewy Body - have a google to find out what it is.
Involve SS again and get them to sort it out.

I’ve never heard of this but I had a quick look and definitely sounds like he has this - the only thing is never noticed any issues with his memory and concentration!

No idea - it was very much asking me ‘so what do you want to do about it’ 🙄

Thank you! This is very helpful I will contact SS today.

You’ll have to say that there is not much you can do as you have commitments and live so far away.

Supported living will have to contact SS and say they can’t meet his needs - they will have to reassess and get him placed somewhere else.

You will have to be very clear you cannot do this yourself (and please do, you can’t manage alone and you need to protect yourself and prioritise your children).

The delusions and hallucinations with Parkinson’s Disease Dementia are very difficult and he needs to be somewhere that can meet his needs - and that is definitely not something you would be able to do.

I’d speak to his GP urgently as well as social services, or his specialist Parkinson’s nurse if he has one (he should do, do you know their contact details?)

He may need a highly specialist centre - the average nursing home that claims to specialise in dementia may not be set up for this.

He probably needs a neurologist referral to look at his medication again.

It is also JUST possible that with this level of unpredictable behaviour he might be eligible for CHC funding. Probably not as it is getting harder to get, but at the very least you should ask the social worker to apply for it.

I agree with PP that Supported Living and Social Services need to work this out between them. SS should get him reassessed as it does sound like Parkinsonian Dementia, and he needs to be in a care home which can meet his needs. Once you have alerted Social Services, you should not need to have much input into what action is taken.