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.

I wouldn’t do anything to prolong his life in this situation.

@Fluffycloudland77

I wouldn’t do anything to prolong his life in this situation.

He has a DNR signed, the doctor suggested that and he agreed to it. Although his mobility is basically nil he's not actually that unwell. He has heart failure associated with atrial fibrillation but no one seems concerned about this, I think you can go on with that for ages.

He has had several large skin cancers (squamous cell carcinoma) removed from his head and he is having a CT scan following the latest one on Tuesday so they must think it might have spread. I'm not sure what they will suggest if it has. Do they give people in his condition radiotherapy or chemotherapy or do they advise against it? If he was sick or something all the time and having to be transported into hospital all lot this is all more stress. If he was vomiting a lot I don't think mum could cope. If they would admit him for treatment that would be a blessing and we would welcome it gladly.

The main risk to his life with his Parkinson's plus condition is aspiration (inhaling food and drink due to inadequate swallow), he has had a chest infection for which he took antibiotics last week. Liquid and soft foods seem to make it worse we've figured out, which was what mum was giving him as she thought they'd be easier to swallow.

I think especially if the cancer hasn't spread he could go on like this for potentially a few more years, he will end up completely bedridden. I have had to look all this up and tell them as the doctors seem terrified to tell them the truth and upset them. They sugar coat everything and Dad had the impression he could get better for ages. It's a degenerative condition, you only get worse, you have to try really hard to keep any mobility you've got and Dad is not motivated to try. He's had all the medication and none had helped so he's stopped most of it now as it was making his ankles swell hugely which further reduced his mobility. He was being hoisted a couple of weeks ago so the ankles going down has got him to be able to stand for a few seconds with aids.

Your third paragraph is something that would make his life better isn’t it?.

If you start moving £ around you're potentially at risk of intentional deprivation of assets. If your mum moved her half to another empty joint account then she'd lose another half?? There are specialist care fees financial advisors e.g www.moneyhelper.org.uk/en/getting-help-and-advice/long-term-care-advice/get-financial-advice-on-how-to-fund-your-long-term-care

@hamsterchump

Unfortunately there's little to no help for dealing with someone that doesn't want to be as independent as possible, when you've exhausted all the possible reasons such as inability, lack of confidence, confusion etc sometimes you really do come back to "They don't want to".
The reason however make little difference to the practical issues it throws up, although it's very frustrating on an emotional level certainly.
Wrt the things your dad is asking you/mum/neighbors to do, could you persuade your mum to invest in some moving and handling aids to make things safer and easier for all concerned?
'Drag lifting' (getting someone under the arms and pulling) is dangerous for all concerned, especially your dad as it puts shoulder joints at risk. If you termed it this way maybe would they agree to things like a slide sheet (a double slidey sheet where you roll someone from side to side to put under and then slide the sheet with the person on) and a profiling bed that moves up and down, lifts head and feet etc to ease the physical strain on all concerned?
They are available online and look around for a company that will show you how to use them correctly and safely.
Those are the types of things would be used in a home to reposition people safely - from your description of your dad he'd likely kick up a fuss however you'd have to be firm I think and say you'll do it, but you (and everyone else) will do it safely, for everyone concerned. I know that's easier said than done where your mum is concerned though, and you'd all need to be sticking to the same thing.

At the moment care home visits are limited in number and time for most places, but this varies from home to home and likely to change (the overall guidance) in the near future with the changes to restrictions in wider society.
For example ours has an hour limit and 3 named visitors, with a maximum of 2 at a time, we have to reduce that to half an hour at weekends as so many people need to visit at weekends as they're at work during the week and it means we can fit everyone in and it's fair than filling all the slots and someone going without.
In the past I've known families never visit at all until the end, and I've known families visit every day for hours at a time, I've also known residents refuse to see their visitors or get us to ask them to leave after 10 minutes - there really is no norm in a care home for visiting because every family is different and has a different dynamic.

I feel for you , tho what’s happens if mum falls Ill can’t cope, measures will happen.

Just to say as an adult soeech and language therapist there's no real evidence that thickened liquids extend life. They reduce coughing, which can be debilitating, and they quite often reduce aspiration when you xray where they're going, but what seems to happen is that thickened liquids when aspirated make any chest infections that do happen much worse and more serious. That said, a lot of adult SALTS still use thickener (including me at times) as there isn't much else to be done, and reducing coughing is sometimes worthwhile.

It may be that the dry foods because they need more chewing give his slow Parkinsons swallow more time to get going. He may find toast easier than bread as toast doesn't suck out the moisture from your mouth the way bread does.

Without having laid eyes on your Dad that's some possibilities for the SALT to consider!

I'd say that within that pot they have a 'pot' of 37,500 each (if it's a joint account). Your fathers half gets spent on care until it's down to 23,500. So when the account gets to £37,500 (your mums share) + £23,500 (the amount your father is allowed to keep) = £61,000 your mum contacts social services, tells them that your father is no longer self-funding, they will do a financial assessment etc.

Sorry I've ranted on again, once I start it's hard to stop. I think cos I never used to talk about it and sort of "forgot" it, now it all comes out more, maybe that's better I don't know.

I'm not surprised that it's all tumbling out now OP. This is why people (like your sister) end up having breakdowns and therapy. Not because they are weak or 'that kind of person', but because one can only live with the effects of abuse for so long. You haven't forgotten anything, it's all in there somewhere: what's happening is that, as your father's hold over you gradually reduces, you are not repressing those horrible memories and emotions as much, they are starting to bubble up and over and spill out. Seeing your mum still - after all these years - run around tying to make him happy and keep the peace, that must be hard: to watch her still putting him first despite the way he treats her and everyone else.

[quote SweetFelicityArkright]@hamsterchump

Unfortunately there's little to no help for dealing with someone that doesn't want to be as independent as possible, when you've exhausted all the possible reasons such as inability, lack of confidence, confusion etc sometimes you really do come back to "They don't want to".
The reason however make little difference to the practical issues it throws up, although it's very frustrating on an emotional level certainly.
Wrt the things your dad is asking you/mum/neighbors to do, could you persuade your mum to invest in some moving and handling aids to make things safer and easier for all concerned?
'Drag lifting' (getting someone under the arms and pulling) is dangerous for all concerned, especially your dad as it puts shoulder joints at risk. If you termed it this way maybe would they agree to things like a slide sheet (a double slidey sheet where you roll someone from side to side to put under and then slide the sheet with the person on) and a profiling bed that moves up and down, lifts head and feet etc to ease the physical strain on all concerned?
They are available online and look around for a company that will show you how to use them correctly and safely.
Those are the types of things would be used in a home to reposition people safely - from your description of your dad he'd likely kick up a fuss however you'd have to be firm I think and say you'll do it, but you (and everyone else) will do it safely, for everyone concerned. I know that's easier said than done where your mum is concerned though, and you'd all need to be sticking to the same thing.

At the moment care home visits are limited in number and time for most places, but this varies from home to home and likely to change (the overall guidance) in the near future with the changes to restrictions in wider society.
For example ours has an hour limit and 3 named visitors, with a maximum of 2 at a time, we have to reduce that to half an hour at weekends as so many people need to visit at weekends as they're at work during the week and it means we can fit everyone in and it's fair than filling all the slots and someone going without.
In the past I've known families never visit at all until the end, and I've known families visit every day for hours at a time, I've also known residents refuse to see their visitors or get us to ask them to leave after 10 minutes - there really is no norm in a care home for visiting because every family is different and has a different dynamic.[/quote]
He does have all of this. He has a remote control hospital bed downstairs with special mattress for pressure sores. He has a Sara Steady now which he uses to transfer. He used to use a hoist but it's still in the other room. He has a commode and they have slide sheets. He has almost everything you can I think. He says he wants bed rails on both side so he can push on them to sit up more but I think they're difficult to get, something about them being restraints or something? He seem to think he'll be able to move about better with them because he had them in hospital although he wasn't as bad then (spring 2020).

It's not that they don't have all the kit really it's that they don't have anyone there who's confident to use it all the time or when they need to. Mum is getting better with the equipment but she's still more likely to pull him about by the arms or under the arms than use all the slide sheets, she would need another person to do the latter anyway I think and she thinks it's too much faff. She has been told not to pull him.about but if he's on at her to do it she still will. She will always follow Dad's instructions before anyone else's it doesn't matter how many times you say.

Obviously I could be trained to use all this stuff (I did help with the hoist once and found it doable) but I don't want to provide his day to day care and if I took an interest they would be overjoyed to ring me up all hours of the day or night to "just" do something. He really wants someone available to him 24 hours a day but doesn't want to pay or move. It's easier for me to say I can't do that (when it's only half true, I could learn but don't want to) than I won't do that. Also then we can say I can't do it and nor can BIL or neighbour as if it's just I won't, he will go down the list. I don't want to get drawn in to doing any more as they will stop the carers they've got and say they can cope with me doing it as well as/instead of mum. They would just allow me to do it and never say I shouldn't I see that now. Even mum will ask anyone to do anything for Dad and never say they shouldn't be doing it. It's like she's accepted Dad being happy and having his every need immediately met as the most important thing in the world and everyone can be sacrificed or injured or alienated in order to achieve that.

I think everyone providing informal care when they don't want to is enabling them to be in the shit situation they are really. If the neighbour or BIL had never agreed to help, dad probably would have had another fall and gone into hospital and come out with a care plan or home place or mum wouldn't have been able to move him and they would have to have carers more often or he would have to go in a home etc.

My OH thinks I should back off a bit (I'll still do shopping, cleaning, driving, offer to take mum out and admin as I have been for a few years) and not keep going over old ground and having endless discussions and sittings down that come to nought. I think I will try to say of they ask, something like "You know my opinion is thus and I'm not going to go over and over it again, you ultimately have to make your own decisions and I think we're just wasting time" and let them get on with it for a while and see what happens.

Yesterday was our attempt at an intervention of sorts and I don't think it will have stuck, they won't change anything until something forces the issue.

@Fluffycloudland77

Your third paragraph is something that would make his life better isn’t it?.

I'm not sure what you mean really? I suppose stopping some of the meds.making his ankles go down made his life a bit better (although I'd argus not in his case as he likes being as helpless as possible, it's his only way of controlling people he's got left) but it also made moving him easier which is better for his caregivers. It also wasn't my decision, they decided that between them and the doctor.

@PermanentTemporary

Just to say as an adult soeech and language therapist there's no real evidence that thickened liquids extend life. They reduce coughing, which can be debilitating, and they quite often reduce aspiration when you xray where they're going, but what seems to happen is that thickened liquids when aspirated make any chest infections that do happen much worse and more serious. That said, a lot of adult SALTS still use thickener (including me at times) as there isn't much else to be done, and reducing coughing is sometimes worthwhile.

It may be that the dry foods because they need more chewing give his slow Parkinsons swallow more time to get going. He may find toast easier than bread as toast doesn't suck out the moisture from your mouth the way bread does.

Without having laid eyes on your Dad that's some possibilities for the SALT to consider!

Oh ok thank you, I just assumed thickened liquids would be suggested but admittedly I wasn't too keen on the idea as it's only another thing on the list to do every day, it also sounds gross to be honest!

I have heard that later a feeding tube might be suggested but I've read that they don't actually prevent infection as it jusst passes down the tube and you have the extra dealing with the tube and keping it clean and it obviously is hugely detrimental to quality of life. I haven't mentioned abiut feeding tubes to them but I think I would advise against one. I wouldnt want one if I were him and I don't think we should prioritise extending life at any cost to quality when the quality is already very poor.

You cannot make him go into a care home against his will I'm afraid as long as he has capacity which it appears as though he does

You cannot really change his behaviour only your own so I would suggest that you put boundaries in and that neither you nor your mum do anything that you don't want to be doing
Eg She absolutely should not sleep downstairs and she should go out with you when she wants to. If he can't cope at these times then he'll need to have formal paid carers in either paid for privately if he has more than threshold or ask LA to assess for care package otherwise. You can get a 'sitting service' for her to go out
If he declines these things and he has capacity then it's his own unwise decision

All the informal care is basically propping him up and enabling him in an unsafe situation. You need to talk to the neighbours and BIL etc and tell them that what they are doing is not helpful. Then you offer to help your dad get a better care package and that is all you offer like a broken record.

The no care available thing is absolutely shocking. I bet you could get more calls or double up carers for the NHS stop gap care though if a) your mum declined to assist any more or b) he is getting pressure sores (needs district nurse to assess if this is the case)This would be a sign of neglect which would be taken seriously

You could consider putting a complaint in to the LA about neglect through failure to meet his care needs which is a safeguarding matter. That might get them moving but you'd have to show that you asked for more care and it was refused by the LA for that to stick.

Also usually you do get what you pay for in this life sadly so I would have thought you might be able to get private agencies to step in if you offer a higher rate or longer hours to make it worthwhile for them. New care agencies often spring up where there are shortages or ones from neighbouring areas might come in as that's the free market after all. By asking for the LA to arrange it I think you limit yourself to paying their rates whereas if you arrange it yourself you can pay more and jump the queue. Not fair but that's life.

@CovoidOfAllHumanity

The no care available thing is absolutely shocking. I bet you could get more calls or double up carers for the NHS stop gap care though if a) your mum declined to assist any more or b) he is getting pressure sores (needs district nurse to assess if this is the case)This would be a sign of neglect which would be taken seriously

You could consider putting a complaint in to the LA about neglect through failure to meet his care needs which is a safeguarding matter. That might get them moving but you'd have to show that you asked for more care and it was refused by the LA for that to stick.

Also usually you do get what you pay for in this life sadly so I would have thought you might be able to get private agencies to step in if you offer a higher rate or longer hours to make it worthwhile for them. New care agencies often spring up where there are shortages or ones from neighbouring areas might come in as that's the free market after all. By asking for the LA to arrange it I think you limit yourself to paying their rates whereas if you arrange it yourself you can pay more and jump the queue. Not fair but that's life.

They did have double handed visits in the beginning as i said mum was not at all confident with the equipment they were using and they needed two. Unfortunately, since then then they have asked Mum if she can cope with one and she has said she can so one is what they've got. To be honest it doesnt make much difference as despite them telling her she doesn't need to, she hovers around them when they're there and never takes advantage of the time. I think she worries they won't do everything exactly as he likes it, despite him being more than capablke and keen to tell anyone exactly how he wants anything doing. She really is the perfectly trained servant for him.

She wants to not have the carers at all and says she thinks she can manage with the Sara Steady they have now. We tried to change her mind on this but eventually (after hours) we said well if that's what she wants then she can try to do it all when the carers come so they can step inor assist or prompt and yeah if she can do it all then I suppose we can't stop her. I think she will burn out if she does that, although I'm not sure what that will look like?

She has always soldiered on through any illness or pain to get Dad what he wants. He dissuaded her from having a hip replacement for about 10 years and so she didn't, she walked with pain and a stick every day and could barely leave the house. I suppose that suited Dad, as long as she could cook and clean for him, her pain meant nothing to him. He would get mad that she walked too slowly. It was only when she started getting pain in her other hip and she realised she wouldn't be able to walk at all that we were finally able to persuade her to get them done which was a huge success and she is now pain free and walks unaided. The surgeon said hers was one of the worst hips he'd ever seen.

Luckily she was able to get them done before covid and before Dad was diagnosed. We knew something was wrong with him but we didn't encourage him to the doctor as we knew we had to get Mum sorted first. If we had waited Mum would never have had them as all the focus was on Dad once he knew something serious was up and she wouldn't have left him to go into hospital whatever the cost to herself I think. As it is he convinced her to discharge herself early only the only visit I wasn't there with him to stop him because I couldn't park in the carpark!

There is a real difficulty getting care packages at the moment, has been for the past couple of months at least.

If your DF has capacity then he is able to refuse care, care at home or care in a care home. If no one was providing that care and it made him unwell that would be his choice if he has capacity. You are allowed to refuse care even if it will save your life.

That said, it is probably worth asking social services to complete a capacity assessment. You mentioned some cognitive decline and it would be helpful to know if he really understands the consequences of withdrawing care (either by refusing carers or exhausting your DM). The assessment itself might force him to consider the situation even if it says he can choose to do this.

The funding thing you are sadly correct, they will take it as self funding until half of the joint account is 23.25k so effectively until there is 46.5k left. Moving money to another joint account won't change this. It might be worth having a quick chat with a specialist to see if there is anything that can be done (also if the house is owned look at being tenants in common rather than joint tenants, can protect some assets if someone does go into care and their partner dies).

I would seek carer support for your Mum, local groups (there might be a parkinsons uk branch locally, carers uk / local district carers, Age UK - sometimes have their own carer service). Also look at if they might accept non care help? Paid help with housework/ gardening / delivery meals etc. it can sometimes feel less invasive than care but still relieve some pressure. Getting support might help your Mum to find some boundaries in what she can provide and stop putting herself at risk (you could report to safeguarding but really if both parents have capacity and are choosing this life they can't do a lot).

I am really sorry you are in this awful situation.

I think that, sad as it is, you have to accept that your mum is a capacitous adult too and she has made her own unwise choice to stay with this abusive man. If he declines care and she supports him in doing that then there is little that anyone else can do. I think you would be right to maintain your own boundaries, only offer what help you are able and remind yourself that any bad things that befall them are unfortunately the result of their own choices.

In not so very long I suspect he will be bedbound and require turning and that will mean 4x a day double up care at least and/or it will wind up with a pressure sore or a chest infection and a hospital admission from whence you can make sure your mum never goes to any care planing meetings without you and you can support your mum to decline to care for him any longer.

Basically you just have to wait for the inevitable crisis because there is almost no way that he can be removed straight from his house to a care home against his will.

You mentioned some cognitive decline and it would be helpful to know if he really understands the consequences of withdrawing care (either by refusing carers or exhausting your DM).

This is so true. My mother didn't grasp the consequences of me being unable to care for her for any reason. Even though she was judged to have capacity the lack of understanding about consequences was sufficient for the social worker to persuade her to agree to residential care. If she had not agreed they would have gone through the Court of Protection.

Half of the £75000 is hers, and won’t be included in the financial assessment, so LA funding will kick in when his savings are down to £23000. But to avoid confusion down the line your mum might like to consider moving her half to a separate account in her name only once the current financial assessment is done. There was a case on here where the LA seemed unable to grasp the idea and kept insisting that half the joint account was the husband’s even though he’d been in care for years and already spent his half on care.

The new cap I can’t see will make much difference to most people. It’s on care costs only, not accommodation , food, heating. So if you take the not unreasonable assumption that the care home cost is £500 a week care and £500 accommodation etc, then that’s £26000 a year care and it’ll be more than 3 years before you reach the cap. Most people don’t last that long in care.

Would have to move it to a sole account not a joint account.

And keep good records so it was clear it was only her money transferred not some of his

There’s no limit on the length of visits according to Government guidance, but individual homes can impose limits to ensure there aren’t too many visitors in the home at once, and to reduce the amount of mixing

A lot of care homes aren't accepting visitors or are very limited.

Your Dad sounds a nasty selfish man and I'm so sorry that you are having to deal with him.

I do think you and your siblings/partners need to step back.

Your Dad has made your Mum comply to his needs.... and in turn your Mum is doing the same to you all by refusing to accept the reality of the situation and relying on you all.

OP, I understand that your mum is in a stressful situation which is impacting on her. But is it possible that she's showing signs of dementia herself? The way you describe her difficulty making decisions or retaining what has been said, makes me wonder whether your dad's behaviour is masking something with her.