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 don't know the ins and outs. Bumping for you.

Would she come to stay with one of you for a while? You could say that you need her for some reason.

At the very least she should have a carer's assessment of her needs by social services. But I've no idea what the waiting list is like.

Ultimately focusing on her and ignoring him may be the only way.

Sounds awful for you both, is it worth having full on frank conversation that if he doesn’t work with your mum she’s going have breakdown and then he will have to
Go into a care home. Where the standard of care will be much less because they don’t have staff that will come every 5min and certainly can’t be shouting at.

Doesn’t sound like your mum is someone who could be prepared to say I’ve had enough I can’t do this any more and stay with you for while for example. But if she did they would be emergency care put in if he can’t even get out of bed or stand.

Could you start by talking her out for
Hour, taking no excuses and once your dad is sorted leave him to it. He sounds such a nightmare do feel for you, I’ve got family member who hate relationship always unhappy but because of age and financial reasons feels like can’t leave and so
Sad to see not one joy in their life.

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

Can you urgently get a Carers assessment? Perhaps ask how it is initiated by calling the GP or social services?

You need to speak to adult social care in your area I think. Could you start off by requesting respite care (although with the view to making it permanent)? It might be easier to persuade your mum to accept the short term respite which would give her the space to then think about the longer term. It may also make it easier to persuade him to leave the house.

Have you thought about how it will be funded? I think first step is to speak to the social workers and explain your mum is at breaking point. If you feel you are being fobbed off you could always say she's coming to live with you for a few weeks from X date & there will be noone to care for him, if it helps move things along a bit.

Sorry you are all going through this, it sounds incredibly hard.

It always worth mention abuse to social services they have duty of care to older and vulnerable people not just those having care. They need see it’s also safe place for your mum to be and should understand the coercion used by demands higher than care needs. Even if your mum can’t get her head around it being abuse as such.

If he has capacity he cannot be forced to move out against his wishes but your mum needs a break regularly. Speak to Carer Support or w whatever your local area has. See if you can get someone to live in our spend the day or so some night sits so she gets to recharge her batteries. She probably will not learn to say no to him at this stage but she can and should have regular breaks.

I personally would frame your mother being elsewhere (if you can persuade her) as a visit or a rest, rather than her 'moving out' just because I don't know what the legal or financial consequences of her moving out might be on his care. Also because whereas I can imagine her coming to you for a visit, I really can't imagine her leaving for good, if she hasn't by now.

Good suggestions. Get your mum out of there and let SS know that an elderly vulnerable man is alone indefinitely. However your mum would need to comply OP. You’ll have to try to persuade her.

@PermanentTemporary

I don't know the ins and outs. Bumping for you.

Would she come to stay with one of you for a while? You could say that you need her for some reason.

At the very least she should have a carer's assessment of her needs by social services. But I've no idea what the waiting list is like.

Ultimately focusing on her and ignoring him may be the only way.

We hadn't thought of asking her to leave the house at all, they would be self funding for any care, would leaving the house cause the Council to think they could sell it though. Mum jointly owns it with Dad but I thought they only couldn't sell your house if a spouse or some other relative was living there. I don't think she would want to leave, she doesn't think he's abusive or she would never call it that, she always minimises everything he's done.

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.

Hi OP. Sorry things are so hard.

Is your Dad not able to sit in a wheelchair? Not to minimize the situation, but he sounds frustrated and angry with his disability, and may be lacking king social interaction. Yelling for help gets attention of course. If he could sit up with everyone he may feel less need to yell.

I was trained as a physio a long time ago and am no longer qualifed but I do know Parkinsons can cause some cognitive decline. Also, doing something like feeding yourself requires a larger movement than using a phone. This means any tremor or rigidity will have more effect.

Your Mum and a carer should probably not be lifting him.

Can you get an OT assessment? They may have some suggestions for making physical care simpler and maybe with his behaviour.

It also sounds like you need more carers and someone competent.

Of course a long term care facility is always there. Your Mum surely needs relief from all this one way or another.

@Akire

Sounds awful for you both, is it worth having full on frank conversation that if he doesn’t work with your mum she’s going have breakdown and then he will have to Go into a care home. Where the standard of care will be much less because they don’t have staff that will come every 5min and certainly can’t be shouting at.

Doesn’t sound like your mum is someone who could be prepared to say I’ve had enough I can’t do this any more and stay with you for while for example. But if she did they would be emergency care put in if he can’t even get out of bed or stand.

Could you start by talking her out for
Hour, taking no excuses and once your dad is sorted leave him to it. He sounds such a nightmare do feel for you, I’ve got family member who hate relationship always unhappy but because of age and financial reasons feels like can’t leave and so
Sad to see not one joy in their life.

We have said about the likelihood of a care home if Mum can't cope any more in the past but he just rants and raves that he'll never go in a care home and that he hates us and we're all ungrateful and awful for mentioning it and goes on and on and on. His voice has so much more power when he's angry and he'll say anything. I don't think mum could cope well with it, she'd prob tell us to stop saying that and that it wasn't true etc just to stop him, that's what she usually does, she does anything to keep him happy.

He also just forgets these conversations have ever happened once he's calmed down. Then he will suddenly say he loves us when he needs or wants something again.

Part of the trouble is that she still worries about him and isn't at all hardened like we are to him now (we have to be, my sister had a breakdown a few years ago, I realised when she and I talked that I had sort of blocked a lot of it out). I should say he was never physical with us, it was all shouting, insulting and belittling, it's surprising how it can affect you.

@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

Did your FIL agree to the respite care initially or was there a lot of upset?

We're your MIL and FIL self funding at least at first? Did her moving out temporarily cause the Council to try and sell the house as she wasn't living there at all? We're worried this might be possible?

I don't think mum would want or agree to leave the house anyway probably.

My sister has suggested she and I go over there tomorrow to talk to mum about it and see if we can think of anything to do. Mum is so stressed she's struggling to make decisions now and sort of dithering and changing her mind all the time. I must confess I'm not much better myself, every little worry I would normally brush aside keeps getting on top of me and then sometimes I feel frozen like I can't cope because there are too many things to worry about. I've never felt like this before, it's weird. I have found that taking one thing at a time has helped mum and me to get on with some stuff, especially all the admin, god alive apart from anything all the phonecalls and admin are a full time job!

@Akire

It always worth mention abuse to social services they have duty of care to older and vulnerable people not just those having care. They need see it’s also safe place for your mum to be and should understand the coercion used by demands higher than care needs. Even if your mum can’t get her head around it being abuse as such.

I can only just get my head around it being abuse, only relatively recently after my sister was told what he was like was emotional abuse by her counsellor after she had a breakdown.

I just used to say that he was always angry and would shout and scream and insult us a lot. There was always some reason; not enough money, spilling a drink at dinner, anything in the house breaking, closing a door too loudly, wanting something out of the garage, not being happy and nice enough to him regardless of how he treated us.

It was endless, he hated us while we were there and then as soon as one moved out he would say they were the best one and so much better than the rest of us and if only they would come back to live at home again, it was mental. Then once I moved out I was suddenly the best thing since sliced bread and he loved me so much. I think I avoided it affecting me as much as my sister by blocking it out, accepting the new, nicer him and not thinking about the past.

Now he's vulnerable he wants us to love him and do everything for him but when we were vulnerable he hated us and was horrible to us. I just feel sorry for my Mum, she was scared of him too, she used to cover up stuff for us that we knew would make Dad go mad like if we accidentally spilt or dropped something etc but she never stuck up for us once he started shouting which hurt.

@SouthOfFrance

You need to speak to adult social care in your area I think. Could you start off by requesting respite care (although with the view to making it permanent)? It might be easier to persuade your mum to accept the short term respite which would give her the space to then think about the longer term. It may also make it easier to persuade him to leave the house.

Have you thought about how it will be funded? I think first step is to speak to the social workers and explain your mum is at breaking point. If you feel you are being fobbed off you could always say she's coming to live with you for a few weeks from X date & there will be noone to care for him, if it helps move things along a bit.

Sorry you are all going through this, it sounds incredibly hard.

Yes we have, they will be self funding as they have savings over the maximum. There is no long term home care available in our area that we can find so we have asked social care to find it for us and will pay the £300. He has a temporary carer twice a day at the moment which is funded by the NHS, but it isn't really enough as mum has to assist them and it's only 2 half hour sessions a day.

I don't think the money makes much difference, whatever happens they will have to run it down until they get to the point where the LA step in.

I just think a care home would better meet his needs as at the moment he is only moved from bed to chair in the morning and back again in the early evening and he isn't being turned or anything which I think he should be, he has the beginnings of a bed sore. He has to have bedbaths and use a commode and a penile sheath catheter all the time. He also says he is bored and not doing anything so I think he might actually enjoy it if something was going on.

But I don't think he'll agree to respite or a care home whatsoever so we are where we are.

I think the best thing would be if he could go into hospital for something and then care could be sorted out from there and he could be sort of railroaded by official sort of people, social workers or something, not us. But despite him having loads of things wrong with him (Parkinson's plus syndrome never definitively diagnosed, heart failure, atrial fibrillation, large Squamous Cell Carcinoma on his head which might have spread awaiting CT scan, and a recent chest infection probably due to aspirating food and drink) no one ever suggests admitting him cos none of it is bad enough I guess.

@vdbfamily

If he has capacity he cannot be forced to move out against his wishes but your mum needs a break regularly. Speak to Carer Support or w whatever your local area has. See if you can get someone to live in our spend the day or so some night sits so she gets to recharge her batteries. She probably will not learn to say no to him at this stage but she can and should have regular breaks.

No I don't think she'll ever leave him, sometimes we talk about what he's really like (he would never provide this level of care or anything close to her for example, he cares about no one but himself) and she sort of seems to accept it but then she goes back to saying "oh he's not all bad, try to think of the good he's done".

Part of the trouble.is that in our area there is no home care available at all, nothing to take over from this short term NHS care he is receiving, so we can't get any more than we have which isn't enough. There are loads of people waiting in hospital apparently, it was on the local news and all the private care agencies we've rang have told us as much.

@LoveFall

Hi OP. Sorry things are so hard.

Is your Dad not able to sit in a wheelchair? Not to minimize the situation, but he sounds frustrated and angry with his disability, and may be lacking king social interaction. Yelling for help gets attention of course. If he could sit up with everyone he may feel less need to yell.

I was trained as a physio a long time ago and am no longer qualifed but I do know Parkinsons can cause some cognitive decline. Also, doing something like feeding yourself requires a larger movement than using a phone. This means any tremor or rigidity will have more effect.

Your Mum and a carer should probably not be lifting him.

Can you get an OT assessment? They may have some suggestions for making physical care simpler and maybe with his behaviour.

It also sounds like you need more carers and someone competent.

Of course a long term care facility is always there. Your Mum surely needs relief from all this one way or another.

He could sit in a wheelchair but is not comfortable at all in one so is only generally in one when it's necessary like going to hospital. He tends to slump to one side and even in his rise and recliner chair has loads of pillows to sort of prop him up. Mum couldn't safely get him in or out of it anyway, it needs at least two people who know what they're doing and mum finds all the equipment bewildering. A carer only comes twice a day to wash him, out on commode and in or out of bed. There's no availability for anything else at the moment we are waiting to hear.

He doesn't have Parkinson's proper, it's some kind of Parkinson's plus disorder (probably Corticobasal Syndrome or Progressive Supranuclear Palsy or Multi System Atrophy but it can only be diagnosed at autopsy). He has no tremor at all, he is bent over/curled up and unstable and has the very slow movement of Parkinsons however. He may have some cognitive decline but is quite cogent.

They aren't lifting him any more now that they have a professional carer, well mostly not, sometimes she pulls him forward when he goes on and on that he's not comfortable. I've told her not to but he keeps on when im not there and she does to stop him. They have a Sarah Steady aid and use that now I think, he is only moved around the living room where everything is.

What a horrible situation for your mum and you and your siblings. What about speaking to age concern or one of the other charities dealing with older people? Is there anyone you Dad would actually listen to who might be able to tell him not to be so awful and that maybe he should go into a care home? Maybe a GP or family friend?
What about some counciling for your Mum? She sounds like she has anxiety (unsurprising)
Good luck, it must be extremely difficult for you.

Just before I go to bed, a little question for everyone saying to have her stay somewhere else for a bit to get more care put in or a home; what happens if you do this but there is no care capacity available? Because social services are meant to be finding us long term home care now but they said they don't know how long it'll be and there's nothing available, and we've rang round too and there was nothing, their suggestion was to put a notice in the local shop!

What would they do if he needed the care cos mum wasn't there but there wasn't any, would he be admitted to hospital instead or moved to another area? I can see they can't just leave someone but where does the care come from if it isn't there? I'm just wondering what happens in practice if anyone has experience or ideas.

Also does anyone have experience of having a relative with capacity, who really doesn't want to, go into a home? Is it possible or not really? What happens instead if not?

@LetsGoParty

What a horrible situation for your mum and you and your siblings. What about speaking to age concern or one of the other charities dealing with older people? Is there anyone you Dad would actually listen to who might be able to tell him not to be so awful and that maybe he should go into a care home? Maybe a GP or family friend? What about some counciling for your Mum? She sounds like she has anxiety (unsurprising) Good luck, it must be extremely difficult for you.

I haven't tried any charities but not sure what they do really, do you?

Dad doesn't have any friends unsurprisingly! Any friends they've ever had or have are always mum's friends really who tolerate Dad.

I think we might have to try the GP again, although their old GP retired so this one doesn't know them as well which isn't ideal and when my sister tried to ring him to discuss the situation he wouldn't talk to her and said to just go through mum instead, it's a joke!

Everything is so much worse because of.covid too, dad has never even seen a neurologist, he has just seen a video of dad, he's never even spoken to him on the phone! You can't believe how crap everything is right now. Their care needs assessment was over the phone and the social worker just asked "have you got more than £23,500 each in the bank" mum said yes and they just said "ah so you'll be a self funder, it's up to you what you get, have a look or pay me £300 to try and find something." I thought the needs assessment would involve someone actually coming round and you know assessing their needs but no.

She has anxiety now because the situation is so bad and she's getting burnt out, I can't see counselling would really help, she needs to change the situation not how she feels about it.

@hamsterchump

Thanks for the additional info. It is so, so difficult where you are. It seems to me his care is overwhelming his family.

I am in Canada where we do not have the "social care" distinction. Thank heavens. To me it is just barbaric and a reason to set people at sea without proper assessment. Oh, you are self funded! Good luck with that.

You really need a proper assessment. No telephone stuff. They can assess almost nothing on the phone.

It probably seems overwhelming. I know having had my very independent parents decline very rapidly with dementia and a cancer diagnosis in the other. I have never faced anything so difficult, and I had the benefit of my long ago training.

Can you recruit your parents' GP. At the very least an assessment. It sounds like your Dad does likely need residential care.

I feel I can't really help but I wish I could. You are in the box so many of us get in regarding parents.

You do need to try and get your siblings on one page. That is tricky but it will help.

Take care of yourself.
I

I really feel for you and your poor mum. I was a carer for my dad who had dementia. He was pretty horrid to us when he had all his mental faculties, but the dementia made him more vulnerable. I nearly had a break down from it, until we finally decided he had to go into a home as I couldn't cope anymore. My advice is to get as much help as you can, and contact organisations that support carers like this one: www.carersuk.org/

Best of luck x

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.

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 💐

Ring AgeUK. If you havent already contacted them they are the best place to start. Social services are very stretched, but even so, they have let you down very badly. I dont know where you are, but hospital assessments are happening as normal where I live. I have a friend in a very similar situation and her dh has been assessed and moved into a care home recently.