Is it selfish I want to leave home when my mother has a terminal illness

[Justarandomusername]

We've never had a good relationship she's in final stage of co PD she gets confused aggressive makes untrue allegations about me which some believe such as I steal from her she gets up during night I have to put her back to bed or she constantly shouts on me I feel I'm expected to be with her 24 7 if I go out she will shout help me and there's an attitude from neighbours I've been asked to be with her at night inase she wanders around and I wonder when I'm supposed to get a break or rest I've been offered my own place which I want to take but I know I'll get be for taking it as nobody else seems to want to step up and be there there happy to sit back and let me deal with her and there's an attitude if I dare want anytime to myself I feel resentful and used

Sounds like you've had years of being used. How likely are you to get your own place if you have to hang on a while?

It sounds like you need to accept the offer of your own place.

Contact social services, tell them you are moving put and they need to do a care needs assessment.

As far as the neighbours go...is it really important what they think? They clearly don't know everything about your situation so their opinions are irrelevant.

Try to leave as soon as possible.
She’s both taking advantage of you and emotionally abusing you.

You've never had a good relationship so get out as soon as you can!
I might (might) have thought differently if you had previously been close but your life should not be put on hold whilst your mother is ill.
There is nothing stopping you helping with her care if you want to when you move but you might find it much easier to get help once you're not at her beck and call living in the property.

She isn't abusive she's ill
You both need help

It's fine for you to leave but I'd get your mum some proper mental health and social care help and see how you feel if you have more support. It's unacceptable that you are left to do it all.
It needs to be in place before you leave anyway.

PD you mean Parkinsons?
That is associated with dementia in the later stages which it sounds like she has
Go to the GP and ask for a mental health referral. They can assess, diagnose and treat her and support you with how to deal with her behaviour
Tell them she is wandering out and at risk and that you are suffering carer stress/ at risk of breakdown and ask for an urgent referral. In our area that would mean seeing someone within 5 days.
You could get assistive tech eg a door alarm to alert you if she wanders out
You also need to get her a social care package eg daily carers, a sitting service so you can go out maybe respite breaks

Is it COPD the respiratory disease or Parkinsons? I agree with pp take your own property and ask for a social services assessment. Does she have capacity and agree she needs help?

Ah sorry I likely misread. I just saw the PD and not the co PD bit. I guess it should have been COPD?

Well that doesn't cause dementia but confused, bizarre accusations etc. I still stand by that it sounds like she does have dementia and needs her MH assessed.

V sorry you’re in this situation. Would leave for your new housing opportunity, yes, and reflect on what you are and are not willing and able to do from now on, and your own health and wellbeing. For example, are you willing to seek services for health/care services, how often you’ll visit.

Would contact health and social services to inform them she’s vulnerable and will be living alone and (if she is) likely to struggle.

Others’ opinions, eg neighbours, don’t matter. If you have siblings would discuss the situation with them.

Hypoxia due to the condition can cause or much increase difficult behaviour. A relative experienced this with their parent with COPD. Before becoming seriously ill they HAD previously expressed some awful views and accusations, but this escalated hugely as they became more unwell.

Absolutely agree covid whatever it going on it does sound like something cognitive needs either ruled out or supported. Op have you spoken with her GP, or has she been seen by the community mental health team?

what a painful situation.

Do not worry about what people think of you. Reasonable people do know that irrational behaviour from people with illnesses like this will include paranoid and untrue accusations, it is normal.

You cannot and should not be expected to provide 24:7 care in these circumstances.

Yes accept your own place and make preparations to move out.

Inform social services and make them do an urgent assessment of her care needs. Make sure they know you have reached breaking point. Make sure they know about the paranoid irrational stuff too.

If she needs someone with her overnight she will have to go into residential care. You cannot do it any more. You will be put under pressure to change your mind about this but you must be absolutely firm that you cannot take it any longer.

No, it isn't selfish. Until you have lived with someone in the last stages of a terminal illness, you cannot imagine the exhaustion

Take the offer of your own place. It will give you the space and downtime you need for yourself and also to be more supportive of your DM through the next difficult years.

It will also ensure the local authority steps up and provides appropriate care.

Take the place you've been offered. Grab it with both hands.

Are you U.K.? Whichever country you are in , you need to contact the local adult social services department.

I only know English legislation- you request an urgent needs assessment under The Care Act 2014 for your mother stating her needs over 24 hours including going out confused at night abs wandering , and that you are leaving- give them approx date you'll be moving, and accept that new property /place for yourself with your plan to move out.
If you need to withdraw entirely then tell them that, or what you are prepared to do as her informal carer. (For eg "going forward after I move I intend to continue helping her to arrange her shopping once a week and assist in emergency to find contractor to do repairs for house, but I am struggling with and unable to continue supervising her day and night")

They will assess what care support your mother needs. And you will have done your part. It sounds exhausting and is putting your well-being at risk especially as you have a difficult relationship and her illness is causing her to make false accusations against you.

You’ve never had a good relationship but now you have carer burnout/fatigue to deal with too. If you speak to social services then they will try and help you but they will try to help you stay in the first instance.

I’m assuming you meant copd in which case this is probably a continuum of your already difficult relationship but if you did mean Parkinson’s then you must contact social services about the wandering and aggression as you cannot deal with this alone - she would need a psychiatric review.

Its copd she has I live in Scotland I'm exhausted mentally and emotionally and feel isolated and taken for granted i asked Dr in January if she could be referred for restbite as it has to be done through them I got told no apparently doesn't meet requirements on the same day I phoned social work asked if they could refer mum to an organisation called crossroads who have staff who can come out and sit with somebody whose I'll so the person who looks after them could have a break for a couple of hrs I was told no this wouldn't be benefial for my mother what they would offer was somebody phoning my mother once a week for a few min to see she had everything she needed like I was irrelevant and that's the 'help and support' I've had from people who are supposed to be there

So basically whilst you are there services expect you to provide care, please do yourself a huge favour and take the opportunity of your own home.
It will then be up to you if you wish to provide any care.

Justgivemegin that's how it comes across I've felt that way for a while others do the bare minimum knowing I'm here I feel like I've been taken for a mug

Take the offer with both hands.

Tell social services that you've moved out so she is now living alone with no care.

It's appalling you've had zero support.

@RandomMess

Take the offer with both hands.

Tell social services that you've moved out so she is now living alone with no care.

It's appalling you've had zero support.

Darned right... OP you need to be firm with scottish social work, they have a duty of care and you lady need to live. 🌸

@Justarandomusername it's shocking that you have not been offered support that's why it's so important that you take care of yourself. Whilst you are there you are effectively doing Social Services job for them (so of course they want to keep you there).
Please please move into the house you have been offered.

I don't know the law in Scotland but in England and Wales it would not be legal for social care to refuse to even do an assessment. That is very bad.

Respite care is hard to get (care homes prefer to have permanent residents especially since Covid) and the person has to agree to it so I perhaps wouldn't ask for that. With COPD she would be at high risk for Covid so maybe that's why they didn't want to offer the sitting service. Covid has affected a lot of stuff negatively.
You are better off to ask them to make an assessment rather than ask for specific services. It's hard for them to refuse to assess at all. They have a duty to do that. Once they see in person how things are it will be harder to say no to you. I expect you are not managing to get across how bad things are on the phone. COPD doesn't usually make a person confused etc which is why I think she has dementia as well and maybe why people are refusing to help if they think she just has bad breathing. I think if she had a dementia diagnosis/ mental health diagnosis as well you might get more action.
Obviously it should not be like that and I am not condoning it just trying to explain how to get round that barrier.

I'd say try again and ask the GP specifically to refer her for a mental health assessment. Tell them about her confusion and accusations and that you suspect she might have dementia. Tell them she is at risk of wandering out and you are at risk of carer burnout and you need an urgent referral. Tell them you might have to leave her in A&E as a place of safety if you don't get help as you are no longer able to manage.
Then ask social care to come and assess her needs and don't take no for an answer. Tell them you are burnt out and can't care for her anymore. Tell them you are going to leave and she will not have care.
Do you have 111 option 2 for mental health emergency in your area? Where I live you can self refer via that and bypass the GP

The only sticking point might be if she refuses to be assessed. All these services will ask if she agrees to an assessment. Would she agree? Can you get her to agree just to someone coming round to talk to her?

Another thought

If her COPD is end stage ie on home oxygen etc what about the local hospice? They are usually charities and go by different rules to NHS and social care and are often very cari g and helpful.

They don't just take people with cancer but also other terminal conditions and severe COPD would be counted. They often have a day hospital where the person can go once a week or so. My mum went to one when she had cancer and there were people with COPD there. It was amazing for my mum.

They might even offer an admission to review symptom control even if the person isn't dying yet. Also they are excellent at supporting families and sorting out other services.

Maybe see if there is a hospice locally and ask them how to be referred there.

@CovoidOfAllHumanity

Sadly I'm in England and have similar issues with my dad who was declared 'end of life' last April.

No formal diagnosis meant no Marie Curie or Macmillan involvement; local hospice refused 2 GP referrals (GP hasn't even seen him since November); social services won't get involved as he's on end of life care, so we were left with 2 carers twice a day for a man who is bedridden, doubly incontinent, partially sighted, struggles with his speech and is unable to eat or drink without help...mum 81 with her own health problems and me a single parent working full time. I was signed off due to the impact on my MH last November (can't get any help with that either) and am now on an unpaid sabbatical claiming benefits aside was the only way to care for my parents without my own health deteriorating further.

He has now gone into a care home, but my mum is still wanting to bring him home .

Anyway, enough about me.

OP please take this opportunity and insist on more help. As harsh as it sounds you will probably have to tell ss that you are simply washing your hands of the situation.

In the meantime, Crossroads are now called Tu Vida, and I believe you can self refer...we have someone once a week, initially for dad, but now for mum so I get a day off. Definitely try and get in touch with them directly.

Good luck

There's also an Elderly Parents thread on here...do come and join us in The Cockroach Cafe if you want to rant anytime.

We're all going through the same crap and it's very supportive and non judgemental.

Well that doesn't cause dementia but confused, bizarre accusations etc. I still stand by that it sounds like she does have dementia and needs her MH assessed.
It does my friends DM had COPD which caused a form of dementia.