How to stop being a carer when you can no longer cope?

[hamsterchump]

My father has a Parkinson's plus disorder and has rapidly declined recently. He can now no longer walk and only stand with aids and carers. My mum is currently his main carer and he has two visits a day from one carer but mum has to assist this person. This isn't a long term arrangement but some kind of crisis care that is filling in until more long term care can be found, which seems to be impossible at the moment.

Mum is getting closer and closer to the end of her rope and I'm not sure how much longer she can cope with him at home. He is incredibly demanding and shouts her for minor things that he could do himself every 10 minutes of the day, the carers have even commented on how demanding and particular he is and said she doesn't have to answer his every call but he has always been controlling and angry and emotionally manipulative and she can't not answer him.

He seems to enjoy having everything done for him and will never even try to do anything for himself. For example he can use his mobile phone to control their banking apps well enough but he has Mum spoon feed him, wipe his dribble away and use the remote control to adjust his bed. He never troubles himself to even try to do any of these unless someone (usually my siblings or I) insist and then he suddenly can do them but as soon as we go he is on to Mum again to do everything for him.

Mum can no longer leave the house for more than 5 minutes. I used to take her shopping and out to the cinema or for a walk occasionally but he would not allow this now and she feels she cannot leave him so she has no break at all. Even if we are having a cup of tea or food in the other room, he will be shouting bloody murder every few minutes for non urgent things.

My father has always been a very difficult and hateful person and none of us children have a good relationship with him, he was very emotionally abusive when we were living at home and none of us feel close to him, some of us have mental health problems because of how he was.

At present I do their shopping and some cleaning and cooking but I and my siblings are not willing to provide any more than this. He has alienated my brother already by shouting that he hates him (and all of us) when we moved a bed downstairs for him on Boxing Day at my mum's request as he was having her and a neighbour almost carry him upstairs which wasn't safe for any of them.

He also gets mum up in the night sometimes calling out for something and sometimes he makes her sleep downstairs in the lounge with him by guilt tripping her which affects her rest.

We think he ought to be in a care home as he wants 24/7 care and attention and it's only mum supplying this that is enabling him to be home. Mum is 72 (he is 74) and had two hip replacements but she is currently fit although very, very stressed, anxious and exhausted.

He always says "you won't put me in a home" and that he won't go and we know if we suggest one he will rant and rave and swear at us and mum in particular wil feel awful and unable to out up with it. We actually think he would enjoy a care home.if he would ever go to one as he loved being in hospital (he has had two traumatic broken legs and hip replacements) and all the attention he gets, although he later described it to us as "he'll" of course, he never misses a chance for emotional blackmail.

When he was in hospital he insisted that mum visit every day and we would see him smiling and joking before he saw us when he would change to looking sad and complain to us and make mum do stuff for him like hold his urine bottle. And after her hip replacements he insisted she discharge herself early against medical advice as he wanted her home to look after him (he was capable then and my sister and I were cooking for him) this is the sort of person he is.

He is cogent and doesn't have dementia, although sometimes his voice is hard to understand.

What can we do? How can Mum reduce what she does for him or withdraw from being his slave? Could he go into a home if he doesn't want to? They jointly own their home and have enough savings to be self funding for about a year probably.

We feel awful for mum as he has always been verbally and mentally abusive to her and even now when he is so incapacitated he is still abusing her, we have been Abel to get away from him and have our own lives but she hasnt. She is completely gaslit by him as well and feels sorry for him and always tries to see the good and not face up to reality.

Although now, more and more she says this is the worst time of her life. Yet she feels sympathetic to him and that she can't put him in a home and that he won't go willingly, he'd be kicking and screaming, but we don't know how long this can go on for.

She is hanging on by the skin of her teeth, it's awful to watch.

Your mum needs to give written permission for you to speak to her GP. Failing that, you can write directly to her gp stating that this is a safeguarding concern.
The gp cannot discuss with you over the phone due to confidentiality rules.

@Eatglass

We have had this situation with my ILs. MIL ended up in hospital due to a TIA so FIL went into a home for respite. We had MIL to stay with us 'indefinitely' to force social care into dealing with it and his stay in the home became permanent. I wouldn't say he is happy but he is certainly better cared for. My advice is for your mum to remove herself from the home (very difficult i know) but its the only way to move the situation on. Good luck x

I agree with this. She has to leave him (or "leave" him) or social work can't place him in residential care - as he has capacity and she is his carer.

If he didn't have her then his situation is not possible to maintain with homecarers and he would need placement in a residential care home.

It's the only way. I really feel for her and you.

If there is not suitable care where your parents are, is there anything suitable nearer to you or your siblings? If your dad has no friends anyway, what is keeping them where they are?

In the short term, Would there be any prospect of you organising an intervention, so you arrange respite carers to come in four days a week, fit a key safe if required, then last minute tell your mum it is non negotiable that she is coming to stay with you for a week for a complete break, and pack her bag.

Your mother cannot carry on as she is. If she is trying to move him etc at some point she is going to hurt herself and then everything will come crashing down.

As others have said, she needs a carers assessment in her own right and needs to be honest about the impact caring is having on her own health. You can be at the assessment (which might be on the phone, on Teams etc).

Secondly, ring Social Services and ask for an emergency OT assessment. If he is losing trunk control (ie listing to the side), they need to assess him for extra care and equipment to help with moving and handling. Their report will mean social services have to find the appropriate care at home as it becomes a safety issue.

Thirdly, but your parents might not agree, I would suggest using some of the money to progress an actual neurological diagnosis privately. My dad had Parkinson's with Lewy Bodies and became, from a very gentle man) agitated and aggressive. Once he had a diagnosis they gave him meds which calmed him down. It is common with Parkinson's type diseases to have a cognitive decline.

Unfortunately if he has capacity he can't be compelled to move into care. Social services will try to increase care services first to meet his needs up to about four double handed visits a day. Shout loudly - insist he is reassessed for more care due to his safety. Be there when he is assessed so your mum and he can't say everything is ok. It is against the law for a need to be identified but not met (Care Act). social services need to show how they are meeting his needs if your mum is unable to (especially regarding moving and handling). Ask for respite care to be put into his care plan and a sitting service (whereby a carer stays at the home for three hours say) so your mum can have regular breaks.

Good luck, it's a very difficult situation.

Sorry to read what you and your family are going through. This is a safeguarding concern for your mum if she is being abused by your dad - even verbally, and your local authority have a duty of care to act on any concerns raised. If you look up safeguarding on your local authority webpage, this should give you guidance on what to do to get support for both mum and dad.

This is some information on definition of safeguarding adults: www.england.nhs.uk/wp-content/uploads/2017/02/adult-pocket-guide.pdf

Sorry to hear. Definitely reach out to social services. We had a brilliant social worker who helped move my dad to a home, though he was resistant. In the end he settled really well and flourished there. Best of luck.

So you contact social services and say your mum has reached career breakdown and will be moving out for respite and in with you indefinitely in seven days time. Put it in writing. He will therefore be alone. You are also withdrawing any input so no shopping, etc.
If she chooses not to do this then that's on her and nothing will change. Surely she's considering the impact on you too??!

Needs now outweigh wants. Time for different choices.
Unfortunately this situation is being replicated in its many thousands up and down the country. It's why the service is so shite. People living longer and longer.
Not really an issue for the GP either unless there are medical concerns.

We did think of a carers assessment but Mum would have to agree and we wondered what the point was really? As I said I don't think dad would ever agree to any kind of respite or care home or even day centre. Someone would have to drag him out kicking and screaming and he has capacity so they wouldn't do that would they.

This is so hard OP 💐. But your mother needs to leave. Email adult social care telling them she will be away for the foreseeable future - and then ring them to confirm. Hand responsibility to them and get your mum away. Even if it is just for a few weeks.

There’s a risk you are going to lose them parent that cares, because you are ll worrying about he one that doesn’t.

My dm also looked after my df. He was bed bound, but poor dm would run herself ragged. The carers were pretty useless. My db was home, but he was out at work all day. I do think my df would’ve been better in a home, especially towards the end.
My dm is now infirm as she ran herself into the ground. My db is now her cater, but is wfh now.
I think other options need to be looked at and SS need to offer help.

I wonder if it's worth you making some recordings of your dad? If he's nice when people in authority are about.

I think reporting it as a safeguarding issue in relation to your mum is probably the best idea - you could report I think it would be to MASH (if you Google your local authority then MASH it should take you there). MASH stands for multi agency safeguarding hub.

The bedsores thing I think might again need an OT as it sounds like he needs a pressure relieving mattress I reckon.

I don't know how you fix it, but I do think if you say you / your mum just aren't doing it any more and have reported abuse and explain that that's why, then you might well find care is miraculously found. Say she's going away for 3? weeks for respite as a starting point, or that she's going away and may be back but doesn't know when.

When you've tried a few of the options on the thread, remember as well that emailing your local councillor may have an effect on your local authority and then your MP is another port of call.

The assessment wasn’t a care assessment, it was a financial needs assessment. He still needs a care assessment which he’s entitled to even if he is self funding.

If your mother is still living in the home, it’s not included in the assessment. So make it clear that if she’s staying elsewhere, it’s just respite, and she’s looking to move back in as soon as she is able.

What he’s doing is abuse. On AIBU they recommend, I think it’s the “freedom” programme which helps those being abused to recognise it for what it is.

@erinaceus

Have you had a calm, practical conversation with your father about what would happen if your mother was incapacitated for whatever reason? What does he imagine would happen then? As well as being a starting point for discussing their needs, this is a question worth pondering.

Would your father be safe if left alone for, say, an hour or two?

The situation sounds terrible, and very difficult for you all.

Not really, he is not a calm or logical person. If we try he just doesn't listen or take it on board and just repeats that he won't go in a home and this is his house and you can't out him out of it. I have tried to explain that he is completely reliant on mum and no one else is in a position or willing to do what she does and that we need to keep her well and safe if he wants this to continue.

This was even more pressing when he was slightly more mobile because he would lean heavily on Mum (he is quite big, he was over 6 foot before he was so stooped forward and 13 stone, mum is about 5 foot 4 and normal build, he doesn't eat much but if anything he seems heavier now if you have to move him, it must be because he is so rigid so his muscles are often fighting against you) and if he felt unstable, shout that he was falling and she should catch him/stop him. I told her if he falls she should let him go and get out of the way as what's the use of them both ending up in the hospital. But she mostly still ran to him.

So I would say that he can't lean on mum like that as it's dangerous for both of them and he needs her, and he would sort of nod but later it would happen again. Once he's frightened or thinking about his own wants again, everything you've said just goes out the window. Again that's not new, he has always been like that, he seems to just not remember information he doesn't want to know or that's uncomfortable.

I think he would be safe for a few hours really, mum used to come out with me once a week before Christmas and she really enjoyed the break away. That was when he was slightly more mobile bit he would still just sit in his chair while we were gone. To my mind, not much has changed and she could still go out but this has stopped anyway. Now that he's on one room he has got so much more demanding, with these requests every 10 minutes, I know he wouldn't want us to go out and would probably turn on the guilt trip. He would like mum to sit with him, staring at him and anticipating or answering every need. As it is she doesn't have time to do that even if she wanted to as there is everything else to do, the spoon feeding takes ages and makes her late to make her own meals. And she doesn't want to be with him all the time, she says he's not good company as he just talks about how awful it is for him.

He never had any hobbies or interests when he was fit which is a problem as he has nothing to do now. He always thought hobbies were a waste of time and anything he did try always made him angry and miserable. For instance he always did all their DIY, and would spend time on his computer doing something I'm not sure what. But he seemed to hate both these activities, they would bring him nothing but stress and rage. Mum would creep in to offer him a cup of tea or ask if he wanted anything to eat and most of the time he would bite her head off for bothering.

He really is a very unusual person, he never enjoyed anything in his life while he was fit, he was just obsessed with trying to make more money although that never worked. He built his own house in his fifties that is now so unsuitable for them in their old age. It's huge for one with 5 bedrooms, with no downstairs bathroom and all separate rooms and a small kitchen and a tiny garden. It's mad that he built this stupid house for a big family and we all moved out as soon as possible, he drove us away. My sister only lived in the house for a couple of months until he blew up at her at Christmas and ruined everything and she went shortly after.

The one thing I learnt from him was not to waste my life like he did while I'm still young and well.

@WutheringHeights66

I agree with the above and other posters. Carers uk was hugely helpful to me, especially the lovely people of the forum. My dad was lovely but he was 89 with advanced dementia and mum was his full time carer for 7 years and at 84 had a heart operation and couldn’t do it anymore, it would have killed her.

Negotiating social services was the worst time of my life, mum has to refuse to care for dad anymore. They will try and send in carers four times a day which for someone with their faculties and limited self sufficiency is potentially doable, but you need to work together, you, your siblings and mum to refuse to do anything else for him, he needs this explaining to him too, he won’t be happy.

That is going to be your biggest battle, your mum refusing as your dad sounds very difficult.

Sending 💐

Thank you for replying, it's good to get some info from someone that's been there.

Yes I thought we would have to say we weren't doing it any more to get any more help.

The trouble is, in our area no home care (I don't know about care homes yet) is available which is why he's stuck on this interim care from the NHS that is only two visits a day that mum has to assist with. I'm not sure where any care is going to come from. What happens if you refuse to carry on when your area is in a care crisis? Will some care still be provided somehow or would he be admitted to hospital or something, on the news it said lots of people are waiting in hospital in care. To be honest mum would be better off if he was one of them.

Also mum doesn't really like the carers coming in, understandably, I think she finds it intrusive, I would too tbh. And she has to be in to let them in all the time. She feels she can't get anything done because either he's calling or there are phone calls to make or the door's going. You should see the number of notebooks she has about what all the people she's spoken to have said. But this means it's hard to get her to agree to more visits. Sometimes she changed her mind completely and says maybe she can manage him by herself and she should stop them coming then we talk her out of it. It was much easier when he could get around the house himself with his frame and get to the toilet or use a bottle, I think she's struggling to accept that he's very unlikely to get any better now. People with his condition end up bed bound and usually die of aspiration pneumonia.

I think you're right but I don't thnk she will. My sister and I are going over there today to chat to her together as we mostly tag team on WhatsApp. But I don't think she'll agree to anything major really. And even if she did, he'd be screaming and shouting while we left and then would they take him to a home ranting and raving that he didn't want to? I just can't imagine it? Do people really do it like that? Who does the job of getting him there, he needs an ambulance to go anywhere? Everyone else mostly seems to end up with parents with dementia who can be tricked into a he or they see sense and what they're doing to their loved ones and go willingly, this won't be like either of those.

I think she'll end up limping on until she gets injured and can't do it any more, but we will try to convince her.

@Solasum

If there is not suitable care where your parents are, is there anything suitable nearer to you or your siblings? If your dad has no friends anyway, what is keeping them where they are?

In the short term, Would there be any prospect of you organising an intervention, so you arrange respite carers to come in four days a week, fit a key safe if required, then last minute tell your mum it is non negotiable that she is coming to stay with you for a week for a complete break, and pack her bag.

Your mother cannot carry on as she is. If she is trying to move him etc at some point she is going to hurt herself and then everything will come crashing down.

My siblings and I all live in the same county in the SW.

I suppose being close to mum, he will want her to visit every day like she did when he was in hospital (before Covid) and he will guilt trip her to make her do it.

I had considered a key safe, I might mention this to my sister as her husband is quite handy and I'm not really. I think if we could get more carers and they could come in and cope on their own and we could get mum to agree to leave him for a few hours once or twice a week to get out then that might be the start of something. He will say he doesn't want her to go and try to manipulate her and say it was awful etc, but he'd be safe, he's only loving when the carers come as it is. I think this might be our next step. I know everyone says about big things and changes which I understand but this has been going on for so long I can't see any of that being practical or with either of them agreeing. If we keep talking about the possibility of residential care maybe mum will come around to it (I don't think dad will, but I suppose you never know).

Thanks everyone, I haven't quite read them all yet, my responses seem to be so long, sorry. Gotta go now but I'll be back on later I expect.

To be honest I’d be sitting her down for a very blunt conversation about his abusive behaviour towards her and the rest of the family.

I would be explaining that she has 2 choices either to put up with it sons limp along or to do something about it and leave him and move on with you (or similar) but if she isn’t going to do anything make clear you’ll be stepping back as you will no longer be enabling his behaviour or watching him abuse her.

And be prepared to do it too.

I’d also be speaking to social services about her as a vulnerable adult although there may not be much they can do if she refuses.

If he is so money obsessed would the line that "you've paid taxes all your life to get care do should use it" help? Just to try and ease the idea in.

And get reported for elder abuse? How would that help her Mum?

In many ways your fathers illness and deterioration are red herrings here. This is about your father being an abuser and your mum staying with him despite that for whatever reason.

Your mum has tolerated and minimised his behaviour for decades now, and has failed to protect you and your siblings from his hateful rages over the years. Why would she suddenly change her opinion of him now, when he ‘needs’ her even more ? If she couldn’t leave him to protect you and your siblings - her own children - why would she suddenly be able to do it now, when it’s just the two of them?

You be better off on the Stately Homes thread on the relationship board, it might help you see that your mother will probably never leave your father, that’s the choice she has made all along and will likely keep making it.

Best case scenario, he’s going to decline to a point where even social services see that he can’t be cared for at home and take the decision out of her hands. Does she have POA for him ? Alternatively your mum is the one who has some physical crisis which renders her genuinely to care for him and no one else is prepared to take him on.

Sorry OP, it sounds so hard. Have you had any counselling yourself ?

@workwoes123

In many ways your fathers illness and deterioration are red herrings here. This is about your father being an abuser and your mum staying with him despite that for whatever reason.

Your mum has tolerated and minimised his behaviour for decades now, and has failed to protect you and your siblings from his hateful rages over the years. Why would she suddenly change her opinion of him now, when he ‘needs’ her even more ? If she couldn’t leave him to protect you and your siblings - her own children - why would she suddenly be able to do it now, when it’s just the two of them?

You be better off on the Stately Homes thread on the relationship board, it might help you see that your mother will probably never leave your father, that’s the choice she has made all along and will likely keep making it.

Best case scenario, he’s going to decline to a point where even social services see that he can’t be cared for at home and take the decision out of her hands. Does she have POA for him ? Alternatively your mum is the one who has some physical crisis which renders her genuinely to care for him and no one else is prepared to take him on.

Sorry OP, it sounds so hard. Have you had any counselling yourself ?

Hi, what's the stately homes thread?

Yes I agree she will never leave him, she more often takes his side than ours and still minimises everything he's done and sweeps it away what we we say. She has chosen him every time but I still love her, she's my mum and the only parent I got any love from as a child.

I struggle with the change in relationship now as it feels like all of a sudden I've become the parent and they are the children, which is unsettling. I'm 34 and don't have any children by choice and I sort don't feel old or experienced enough to be responsible for two adults and all their affairs, is that normal?

His personality has changed with the illness and he's no longer angry all the time like he used to be. He is still self obsessed but he has taken on a self pitying mentality and plays the victim and goes on that you're not doing enough now and cries crocodile tears to manipulate you. I suppose he realised raging on wasn't going to be as effective at getting us all to wait on him now that he can barely stand.

Yes I think that she is likely to be injured at some point, maybe just tripping as she rushed into him. That would force the issue as none of us would take over and he is really receiving near 24/7 care from mum.

No no one has POA, I don't think he would give it willingly and he has capacity.

No I've never had any counselling, I'm not really that sort of person and I do talk to my OH about it and my siblings now. It's funny, we each thought we were the one he hated the most and that the other two were more tolerated so he even managed to divide us a bit. I think this might actually bring us a bit closer together a bit as we have to talk about this stuff.

Mum's mental state is being affected by the stress and exhaustion, she cat make decisions or forgets she's made them and says we need to do something we've already done or tried, that drives you mad repeating yourself and it not really going in you know?

Hey everyone a little update:

I went round today with my sister and we tried to explain that mum needs to be able to cope with what we level of care they have because if she can't it will only mean dad has to go in a care home ever the sooner as no one else is prepared to provide the care he needs or wants.

They flip between saying they don't want the carers as they don't want t pay and they don't see the value despite them not being able to cope without them, they almost can't accept this. I think because he has got worse, mum compares when he was better without carers with now with carers and sort of thinks it s the cares that are why she's more stressed and not his decline. We tried to explain this also.

So mum says she wants to be able to manage caring for dad alone with the Sara Steady. So we say why don't you try doing it when the carer is present so you can see if you can and they can prompt. We say we can't make her have care but it makes no sense to get rid of it when we don't know if she can cope.

But then on the one hand she says she wants to cope on her own and she thinks she can but they also asked us if we would do the care for him if they paid us. We said that we don't want to, neither of them provided any care to any of their parents when they needed it and dad's mum went in a home for the last two years of her life. We said "you didn't want to do it then, why would we now?". Also if we agreed they would rely on us totally and would call us over at all hours of the day and night, they already call up my brother in law to shift dad in the bed sometimes at night as it is WITH the carers. And this could go on for years and would ruin our lives while we're still young enough to enjoy them.

Mum's so exhausted she can't seem to think logically or take in information, she doesn't want carers and she doesn't want to be his 24/7 carer and she doesn't want him to go in a care home. A lot of it is that they don't want to pay and can't seem to accept they will have to. Sometimes mum is like a child and covers her head and says "I feel like the council is trying to steal all my money". We've said but what the point of money you can't enjoy while you're caring constantly.

We have suggested they have some essential repairs done to the house as they need some things done and that would reduce their savings but in a permissable way I think. Ironically they never had the stuff done because dad didn't want to spend the money!
They need a new kitchen carpet (I know, they have bathroom ones too) as the existing ones is all torn and a tripping hazard. They also need all the glass in all their windows replaced as every single one is steamed up between the panes. Apparently they need a new garage door too as their's is rusting away (coastal area). We think it would be ok to use their savings to do these things and it would be justifiable to the local authority if they end up having a financial assessment later, does anyone know about this? We think it's just that they can't give money away or start doing unusual, non essential spending but surely they must be able to make their house more safe and suitable for them?

We stayed all day and had lunch with them, we insisted Dad try to feed himself and he was quite able to. Interestingly the purees and soft food mum and been giving him seem to be much worse for his aspiration and make him cough and gag. Dry food like cheese on toast and cake went down much easier. Apparently a speech and language therapist might come soon and I think they will recommend thickened liquids, of course that's probably just more work for mum.

We kept repeating that if mum wants to manage without carers (which is what she says) then she must try to see if she can while they still have them so they can prompt her or step in if she needs help. If she can manage him alone she is welcome to and we can't stop her. I don't know if she will remember this or.much of what we said though, at points when we were sat down with her she was almost nodding off in the chair while we were talking and later she started again about something we thought we'd already settled so it's like most of it didn't go in.

Ultimately I think either something will happen that forces dad to move to a care home or someone will be insist they take on more care, we thought this would happen when they got transferred from nhs care to private but that doesn't seem to be happening as there seems to be literally nothing available where we are at the moment.

Nice to see update and least you had time for the chat. Nobody LIKES having carers I’m a disabled adult with no family so don’t get choice. Are they imaging that everyone else enjoys the experience? I understand the money issues I have pay huge sum and I live 100% on benefits with no savings or assets. There are always better things to be spending money on other people can do for free!

Spending money on basic repairs is allowed, but I’d take before after pics etc just case anyone asks.

Is your mum Being pressured into not spending money on carers they “don’t need” or does she really think she can cope? Another option depending on how much they pay now is to employ someone you find yourself cheaper than agency and be same
People you can train up and support your mum. But either way as illness progresses he need more care and your mum will become less able so some point something will have to give. Ideally a caring partner would want look after wife and ensure their
Needs are well looked after.

Your mum lucky have family looking out for her like this, least she can see she has support.

Op I really sympathise with you.

I've been in a similar situation and it's awful - you'll go in circles, round and round ad infinitum.

GP can't help. Social services won't help because he has a full time carer already, regardless of how it's affecting her. He's too ill to manage with just 2 x carers a day but not ill enough for hospital. He has capacity so is allowed to make all sorts of bad and dangerous choices for himself, ruining your mum in the process and no one can or will intervene.

It's fucking miserable.

The only thing that can be done is to be drastic and force social services to step in in a big way.

In your shoes I'd work on your mum. Try and make her see how unsustainable this is. Use emotional blackmail if you have to, tell her you're struggling and are afraid she'll make herself ill and you just can't care for them both.

Then get her to your house and keep her there. Pick the phone up and tell social services he's home alone as your mum has been taken unwell and is at your house.

Force them to do something.

They won't leave him alone in an empty house to die. They'll have to take him into respite. It's an emergency, they'll find a space somewhere.