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 do feel for you and your poor mum. I was in a slightly different position because the person I was caring for was my mum. She is in a home now and that is because of a minor crisis. She had a fall and the carer thought mum might have had a stroke. The GP didn't come out but told me to call for an ambulance and told me what to tell them.

They took her in to hospital and the next day I ended up in A&E with amnesia. The hospital phoned and said she was ready to be discharged and we said that we were unwilling to continue to care for her. We would cook and clean but we not carry out any personal care at all that those seemed to be the magic words that triggered OT assessments which led to her going to a rehab hospital and then into a home. It was clear that four visits a day - the most that Social Services could provide - would not meet her needs.

She hates being in a home and is furious with me all the time but they tell me she is charming and lovely and is having a whale of a time!

I really hope you and your family get some decent support.

Of course they are allowed to spend their own money on their own home. Giving the house or a lot of money to a relative is likely to be a problem but not making their home safe and well maintained.

I'm afraid it sounds to me as if your mum has started some significant cognitive decline herself. I wonder if she would consider giving you POA for her so that you can help her more. The sorts of things I started doing for my mum with a POA for finance was paying the odd bill for her, or being able to look at her finances and discuss them with her. Of course it also means you can pay carers on her behalf...

@Akire

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.

Yes we repeat that nobody wants to have carers but they need them so they have to have them. They can't seem to get this though.

Before and after pictures is a good idea I will do that, thank you.

I'm not sure whether she thinks she can cope or not I don't think she knows either. I think she wants to cope on her own but no one really knows if she can. We left it with her saying she'd try but I'll be surprised if she can do it. There is pressure from dad but she also seems really not to want to spend their money either which surprised me as I thought it was just dad who was always thinking about money.

We don't want to employ anyone and take on all that paperwork and headache, it will have to be someone self employed or an agency. As it is, there is no one available, all the agencies by us are crying out for more staff and none have capacity for new people.

Dad will never, ever say mum (or anyone) is doing too much and should take a break no matter what happens. He will just take and take and take until she can't give any more. He cares nothing for no one but himself.

@SeeminglyOblivious

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.

Yes this is where we are really. Frustratingly every time we go around they/mum seems to have changed her mind about everything we'd decided and sorted out and often has rung people and undone what little good we'd managed. She second guesses every decision.and spends a lot of time worrying about things already done or decided.

I know mum will have to withdraw in some.way to change anything or say she can't do any more/go away for a while/refuse to have him back if he was ever admitted. We are just really waiting until something happens that makes her willing to do this.

We were firm with them today that we would not provide the care he needs if mum could not and he would have to go in a home and so it's in his interest to make mum more able to cope to avoid this.
It feels awful and I feel worried and guilty all the time but I try to remind myself that they didn't provide any care for their parents when they needed it (they had carers or went into a home) and I don't want to ruin my life just to save dad a few quid. He wasted his life when he was well being angry and making everyone around him miserable and I don't want to waste mine, especially not for him.

I think we will have to let them muddle on for a bit longer, if they won't listen to us or agree to change anything then I don't think there's much more we can say at this time. They probably need things to get worse or some sort of crisis or shock to happen before they'll consider any more paid help.

The next thing is dad is having an urgent CT scan following his recent skin cancer removal to see if it has spread. I don't know what anyone will say or suggest if it has.

@IthinkIsawahairbrushbackthere

I do feel for you and your poor mum. I was in a slightly different position because the person I was caring for was my mum. She is in a home now and that is because of a minor crisis. She had a fall and the carer thought mum might have had a stroke. The GP didn't come out but told me to call for an ambulance and told me what to tell them.

They took her in to hospital and the next day I ended up in A&E with amnesia. The hospital phoned and said she was ready to be discharged and we said that we were unwilling to continue to care for her. We would cook and clean but we not carry out any personal care at all that those seemed to be the magic words that triggered OT assessments which led to her going to a rehab hospital and then into a home. It was clear that four visits a day - the most that Social Services could provide - would not meet her needs.

She hates being in a home and is furious with me all the time but they tell me she is charming and lovely and is having a whale of a time!

I really hope you and your family get some decent support.

What is it like with her being angry at you now she's in a home? How often do you visit? I know if dad was in one he would expect mum to visit every day which I don't think would be good for her in terms of getting some respite from him or him in terms of settling in and accepting it. Does she go on and on at you even now? I'm glad to hear the staff say she does enjoy it though.

I think dad would be like this too, the staff told us he loved hospital (2 hip replacements) and we would see him laughing and smiling with them and other patients before he spotted us when he visited. Then he would put his sad face on and tell us it was awful.

I visit once a week - I don't drive, my husband works shifts and I rely on friends or family to take me. My uncle visits once a week as well and my daughter goes when she can.

My original hope had been that she would be in a local home where I could walk to see her every day but talking it over with the social worker I could see that visiting once a week was a more natural thing to do. She has been so dependent on me for years and the more I give the more she would want. Once a week is about all my mental health can take! I did visit extra around Christmas and her birthday but she doesn't remember from one visit to the next who she has seen.

When we were there yesterday a couple of the carers came through the dining room where we meet and she introduced the carer to my cousin and said "This is S, my son and S, this is my niece." She just ignored me!

@IthinkIsawahairbrushbackthere

I visit once a week - I don't drive, my husband works shifts and I rely on friends or family to take me. My uncle visits once a week as well and my daughter goes when she can.

My original hope had been that she would be in a local home where I could walk to see her every day but talking it over with the social worker I could see that visiting once a week was a more natural thing to do. She has been so dependent on me for years and the more I give the more she would want. Once a week is about all my mental health can take! I did visit extra around Christmas and her birthday but she doesn't remember from one visit to the next who she has seen.

When we were there yesterday a couple of the carers came through the dining room where we meet and she introduced the carer to my cousin and said "This is S, my son and S, this is my niece." She just ignored me!

I hope you won't think I would judge you for the amount you visit, I never would. I think we can only do what we can do and it sounds like you've done a lot for someone who didn't appreciate it.

I just wondered what people do when someone has gone into a home, and especially when it's someone very demanding who you don't have a great relationship with. I think dad would expect mum to come every day but realistically even if she wanted to go as much as possible (which I don't think she actually would, she was releived not to be able to visit him in hospital when it was Covid and not allowed) we could probably only take her more like twice or three times a week maximum.

It must be so hard to be visiting and her not acknowledge or not be nice to you.

I know if dad was in one he would expect mum to visit every day which I don't think would be good for her in terms of getting some respite from him or him in terms of settling in and accepting it.

If your dad was in a home he couldn't force your mum to visit him daily. He could get cross with her for only visiting 2 or 3 times a week but that would be witnessed by staff at the home. They would then be alerted that they needed to help your mum by monitoring that there was no abuse of her while she visited and supporting her if she was upset by it. They may even speak to him as well.

The problem is that her current abuse is happening behind closed doors with no one but you and your sibling knowing about it.

I don't know where you are but I believe every council has pages like this advising how to get a care needs assessment. You can request this even if you will be self funding any care. It also gets them both on social services radar in case a crisis comes.

www.cornwall.gov.uk/health-and-social-care/adult-care-services/needs-assessment/

www.cornwall.gov.uk/safeguardingadults

The problem is that her current abuse is happening behind closed doors with no one but you and your sibling knowing about it.

This. The Stately Homes thread is on the Relationships board, it’s mainly for adult survivors of childhood abuse.

Very different situation but when we had to coach FIL to say he couldn’t care for MIL at home any more, we focused on safety. He simply couldn’t keep her safe on his own, even with all the adaptations, carer visits, etc. And he had to say that out loud. So a home was the only option. The difference, I guess, (apart from the abuse) is that MIL did not have capacity by this stage. If she had and FIL had accepted her home ? It would have lasted until the next serious fall, or decline due to medication not being taken correctly, or delerium / UTI / hospital admission due to not drinking enough etc. This is how it seems to go.

If your parents still have capacity, this is when they need to sign a POA. Are they aware that potentially they’re giving all the decision-making power to the local authority by not having a POA in place ?

I know if dad was in one he would expect mum to visit every day which I don't think would be good for her in terms of getting some respite from him or him in terms of settling in and accepting it.

He can expect all he likes, he can’t compel her to visit any more than she wants to. But it sounds like she’s had a lifetime of appeasing his unreasonable and abusive behaviour, and she’s unlikely to stop now.

Things will change eventually OP, just not necessarily on the timescale or in the way you would want them to. There will be a crisis of some sort, and the situation will change again, and you might be able to help your mum out of her situation. Courage.

You cannot be a carer for someone that you are scared of and have an emotional attachment to. I did it briefly for my dad and it was one of the worst experiences of my life. Evey time he shouted I felt the fear and panic rising inside me. Along with the practical difficulties of caring, I had the emotional and psychological difficulties of being abused by someone I loved, but was afraid to challenge. It brought all kinds of problems especially with his medication as he sometimes took the wrong dose and I was too scared to challenge him outright. I tried to gently tell him it was wrong but would just get shouted at.

On the rare occasions he would allow the district nurses in, I could see how differently they dealt with my Dad. Its still horrible having to deal with an angry, volatile man, but they were not emotionally attached and I could see their training kick in whenever a difficult situation arose. In the end, my dad died alone on his bathroom floor after a fall. He had refused any type of care, nursing home or hospice and only wanted me as help even though I was a single mum on benefits living 200 miles away at the time. Looking back, I really failed my dad by not forcing him into full time care. Perhaps you could gently explain to your mum that having to make the difficult decision of getting your father proper care is better in the long-term, even if it is the last thing he wants.

You've all been trained to put your dad's needs above your own. What your dad wants is the most important thing here - except it isn't. Every one of you has their own needs and they are equally as important as his. He is the centre of his world but it's not right that he's the centre of everyone elses. It is not your job to make him happy, it's not reasonable to expect everyone else to make huge sacrifices to please him. It's difficult when this is your "normal" but the reason people are pointing you to the stately homes thread is that that is where you will get some support in managing a relationship with someone so self centred.

@Littlewhiteballs I can't see how you failed your dad. Compared with you and your father my life with my mum was a bed of roses. But she wanted me and no one else for everything. And if we had not been living the way we did with her in the garden of our house she too could have died like your dad.

Please try to look at things differently. You did everything physically possible and he had choices. The choice he made was not the best for him but you were not able to overrule that.

@hamsterchump
My mum is so weird! She's not nasty although we do know she is cross. I honestly don't think she can tell where I end and she begins. The family have pointed out to me that they rarely saw her "ask" for anything - I would anticipate her needs. For instance we would always eat off trays on our laps because she could not get to the table. As soon as she had finished I had to take her plate off her lap - even if I was still eating. My dad, when he was alive, did everything for her and then I did as well.

When she went into rehab and the dementia became really obvious she told the social worker that she has 5 children - she doesn't, I do! She also told her that she was a legal secretary - she wasn't, that was me!

Before the dementia she was demanding and needy but very loving and I did what I did because I love her. But by the time she went into hospital last June I had reached a point where I didn't like her very much.

What @Knotaknitter said is spot on.

I carry out carers assessments and have come across similar situations. I recently assessed a woman in her 70s who was caring for her husband who had been controlling and abusive to her for years but now had early dementia. I spent a long time trying to help her see she didn't have to be his carer, but she couldn't see it. He has now had care visits increased but still horrible situation. But as you have said....if both sides have capacity it is difficult to change things. Sometimes all you can do is wait for things to come to a head which is massively stressful. Its very common to not want carers in the house but still want help. It's common not to want to pay.
I would:
push for a carers assessment...it might help. Use the phrase ' carer breakdown' . I have arranged sitting services in some cases.
LA can help with the self employment admin if you look for a carer yourselves.
LA can't take house if mum is temporarily absent.
Use carers uk and see where local centre is.
You could try telling ss that you have booked a week away for mum and will need respite for dad. If dad refuses to have respite SW would need to do a capacity assessment to see if he understands the risks he would be taking and if not could make a best interests decision.

@NecklessMumster

I carry out carers assessments and have come across similar situations. I recently assessed a woman in her 70s who was caring for her husband who had been controlling and abusive to her for years but now had early dementia. I spent a long time trying to help her see she didn't have to be his carer, but she couldn't see it. He has now had care visits increased but still horrible situation. But as you have said....if both sides have capacity it is difficult to change things. Sometimes all you can do is wait for things to come to a head which is massively stressful. Its very common to not want carers in the house but still want help. It's common not to want to pay. I would: push for a carers assessment...it might help. Use the phrase ' carer breakdown' . I have arranged sitting services in some cases. LA can help with the self employment admin if you look for a carer yourselves. LA can't take house if mum is temporarily absent. Use carers uk and see where local centre is. You could try telling ss that you have booked a week away for mum and will need respite for dad. If dad refuses to have respite SW would need to do a capacity assessment to see if he understands the risks he would be taking and if not could make a best interests decision.

Thank you it's really helpful to hear from someone who works in this area.

If you've got time could you tell me what a carers assessment involves and what they are likely to say?

I think mum and I were both of the opinion that the anyone would just say that mum was fine doing it because she had been as would sort of judge us for making a fuss and not always wanting to do everything for him.

In the past, I've felt judged by people sometimes when they've seen Dad (who always played up his difficulties if he thought it would serve him, get him attention or sympathy) when I wasn't sympathetic and kind enough to him. I think everyone sees a pathetic old man and forgets he could have been any kind of person before this happened to him.

We thought the carers must think why don't we all do it instead of having them but actually mum told me just the day before yesterday that they had noticed eve in their short visits how particular and demanding he is and how he wants everything just so and will boss mum or anyone about endlessly to get it. One made a point of saying to mum that she didn't have to answer his every call. But of course he sounds the same whatever the urgency or request so mum jumps to it every time all the same.

I know she won't want a carers assessment at the moment but perhaps in the near future she will come around to one. It's still helpful for me to know what it involves.

Did the lady you mention tell you that her husband had been abusive and controlling? Or did someone else, or could you just tell?
Mum would never say that, it would be a shock to her if we said that in her presence too, she doesn't see him like we do, she sort of lives in a dream world of what her life was like.

We have (although mum goes back and forth) decided to pay the £300 and have social care find care for him as we've rang round ourselves out of the care directory and found nothing at all. I think they want mum to say she can do it herself or find care herself as they make stupid suggestions like asking the vicar if he knows anyone or trying to get a "little person who does it on the side", from where? She sounds so out of date with the reality of things. Think she's just desperate to get rid of us.
Mum doesn't have time to be doing endless ringing around and we think it's better if the onus is on social care to find him something as the free NHS care he's having at the moment is only meant to be for a few weeks.

If your mum is likely to agree to a Carer's Assessment then get the ball rolling now. I'm still waiting three years on! We were told that the visit mum had from the social worker six months before the carers started was a joint care assessment even though I had specifically said that I wanted to speak to someone alone so I was free to express the issues I had with caring.

But even though that didn't happen the social worker put in her report how dependent and demanding mum was.

@Knotaknitter

You've all been trained to put your dad's needs above your own. What your dad wants is the most important thing here - except it isn't. Every one of you has their own needs and they are equally as important as his. He is the centre of his world but it's not right that he's the centre of everyone elses. It is not your job to make him happy, it's not reasonable to expect everyone else to make huge sacrifices to please him. It's difficult when this is your "normal" but the reason people are pointing you to the stately homes thread is that that is where you will get some support in managing a relationship with someone so self centred.

Yes I think this is the case. At the moment Dad's needs are being met very well. Obviously he is in poor condition but in terms of social care all he has to do is shout my mum's name a few times and she drops whatever she is doing or in the middle of and comes running to him.

Every day she asks him exactly what he would like for every meal and makes it for him, sometimes afterwards she can't be bothered to make anything for herself. She moves pillows and cushions for him all the time so he is comfortable. She wipes his mouth when he drools and had been spoon feeding him despite him being able to feed himself (we saw him do it yesterday). She holds every glass and his straw while he drinks. She does part of the washing and dressing with the carer and she wipes his bum I think. She empties his urine bag. She sits with him when he wants her to though she has other things she would rather be doing in the small amount of time that he's not on like washing or dyeing her hair or coming out with one of us for a couple of hours. She has stopped going to their shop every day which she really enjoyed just to say hello to someone and get some milk or something.

I know this is a small thing but an example of how generally awkward he is and brainwashed mum is was yesterday. I was going to make sandwiches for us all, dad likes sandwiches. I said we'll ask him if he wants cheese or tuna. But he says he wants cheese on toast. We say but we're having sandwiches and it'll be nice to all eat together and we can't always be making different things and if you have the same then mum wil be able to eat with you which'll be nicer for both of you and save time. We're making sandwiches, mum goes back in to him a few times and back to us, worrying and saying "what are we going to make him then? Oh I better just check he'll be ok with that" flapping about. Then she comes back in looking so worried and says "I'll just make cheese on toast for him" so she does that while we carry on. She's like a kidnapped person who's been brainwashed to serve him.

And when he says he doesn't like having the carers we say what's would you like then and he says "if they came when we called them" so we say you'd need live in or a care home for 24 hour care like that. He says "I've got 24 hour care with Mum". We say but she can't cope, she's falling asleep in the chair while we're talking to her and telling us she's almost had enough. So he says "can't you come round and help mum to do everything, you don't do much as it is" He doesn't appreciate anything, nothing is ever enough.

So we said we don't want to provide personal care to him and point out they didn't want to for their parents when they were alive and needed it (all grandparents long dead now) and so they didn't and their parents were nice! Especially my mum's parents, most of my happy childhood memories are all from when they visited, my grandad was my substitute positive male role model, he was so calm and lovely, I always said I would find someone like him and the opposite of Dad when I was older and luckily I have, I don't think I could cope with this if I was on my own with no one really to talk to.

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.

There is a tendency for LA to leave self funders to sort themselves out but legally, under The Care Act they have to support them like anyone else. A Carers Assessment is also a requirement under The Care Act. It will vary slightly from area to area, e.g we have a carers team but some don't. If you Google carers assessments with age UK or which etc, or the LA website they will give you an idea. Basically I complete an assessment form which goes through the background of the situation, how the carer feels about their situation, what support they do or don't have, what would make things better and what would help. We are usually able to give some £ towards something that might help...a break away, equipment etc. Assessments are a skill and we know how to spot things but if the LA is struggling they may not dig too deeply if someone says 'I'm fine'.
The lady I saw told me things had always been difficult and her daughter's had also been in contact. Also other professionals like the dementia nurse. And she looked nervous of him being in the next room. I always check if the carer is able to speak freely when arranging the assessment too.
I know there is a crisis in care agencies at the moment but LA has a legal duty to provide care if they have assessed it's needed. I think unfortunately you have to keep nagging at the LA, once you get an allocated worker it should get better?

I'm so sorry you're all facing this, people who have always been abusive and controlling don't suddenly become saint's because they need caring for, and IME it's a bit of a misconception that everyone wants to be as independent as possible, because I've come across plenty that want everything done for them and have found an emotional crowbar to make that happen.
I can't be of much help but I wanted to say in relation to this

I know if dad was in one he would expect mum to visit every day which I don't think would be good for her in terms of getting some respite from him or him in terms of settling in and accepting it.

That I've come across similar situations working in care and if he does go into a home then speak honestly with the manager and explain the situation around your dad's expectations and your mum's vulnerability. They may be able to help with regards to managing visiting, especially during covid where visitors are limited anyway, and added to this we're not allowed to 'let' visitors do anything to do with moving and handling a resident within the home, to do with h&s and risk assessment etc, I've been the bad guy more than once when I've said no, your DD can't 'just' lift you onto the toilet, I will get the hoist and we'll take you safely to the toilet, I've been called all the arseholes under the sun, and then thanked by the relative because they felt coerced into doing something they don't want to.
I really hope you get something sorted for the sake of you, your siblings and your mum. 💐

@NecklessMumster

There is a tendency for LA to leave self funders to sort themselves out but legally, under The Care Act they have to support them like anyone else. A Carers Assessment is also a requirement under The Care Act. It will vary slightly from area to area, e.g we have a carers team but some don't. If you Google carers assessments with age UK or which etc, or the LA website they will give you an idea. Basically I complete an assessment form which goes through the background of the situation, how the carer feels about their situation, what support they do or don't have, what would make things better and what would help. We are usually able to give some £ towards something that might help...a break away, equipment etc. Assessments are a skill and we know how to spot things but if the LA is struggling they may not dig too deeply if someone says 'I'm fine'. The lady I saw told me things had always been difficult and her daughter's had also been in contact. Also other professionals like the dementia nurse. And she looked nervous of him being in the next room. I always check if the carer is able to speak freely when arranging the assessment too. I know there is a crisis in care agencies at the moment but LA has a legal duty to provide care if they have assessed it's needed. I think unfortunately you have to keep nagging at the LA, once you get an allocated worker it should get better?

They wouldn't be self funding for very long I don't think if they have much care. They have £75,000 in the bank joint but apparently half is considered Mum's for financial calculations.

What we don't know is if you divide the amount in half now and mum gets to keep her half and you just take from the other or if you have to wait til you've got down to £47,000 (£23,500 each I think) and then it's divided in half, mum keeps hers and the LA start to contribute something (I know not all) on some kind of sliding scale.

I also don't know if the person requiring care is allowed to keep any of their personal savings at all, I can't seem to find that out easily.

I will keep on about a carers assessment, it's hard with mum sometimes when you keep on too much she sort of shuts down and won't listen any more and just days she can't cope with anything else on top of everything. Also, presumably because they have money in the bank anything the assessment suggests they will have to pay for and mum doesn't even want to pay for the level they've got now! She keeps on about the money, which has surprised me as I always thought it was dad who had the firm hand on the purse strings and they aren't really struggling day to day. They get full state pension each and manage to save from it every week. Their house is always really hot and much warmer than I could afford to keep mine. They have lived well under their means for years, never spending on anything and scrimping and not enjoying things which was silly really as now it will all go on care.

Joint savings are treated as half each....they won't count your mum's half at all as this financial assessment is for your dad, so half joint savings. Mum's disregarded. Yes upper limit is £23250 then a sliding scale til reach lower limit of £14250 after which savings disregarded. But weekly income...private pensions etc also assessed. But only in dad's name. This all due to change Oct 2023 with new care cap of £86000 but I haven't got my head around this yet. It's hard when people have been careful with £ all their lives to change their mindset..I've said lots of times 'this is the rainy day you were saving for'.

@SweetFelicityArkright

I'm so sorry you're all facing this, people who have always been abusive and controlling don't suddenly become saint's because they need caring for, and IME it's a bit of a misconception that everyone wants to be as independent as possible, because I've come across plenty that want everything done for them and have found an emotional crowbar to make that happen. I can't be of much help but I wanted to say in relation to this

I know if dad was in one he would expect mum to visit every day which I don't think would be good for her in terms of getting some respite from him or him in terms of settling in and accepting it.

That I've come across similar situations working in care and if he does go into a home then speak honestly with the manager and explain the situation around your dad's expectations and your mum's vulnerability. They may be able to help with regards to managing visiting, especially during covid where visitors are limited anyway, and added to this we're not allowed to 'let' visitors do anything to do with moving and handling a resident within the home, to do with h&s and risk assessment etc, I've been the bad guy more than once when I've said no, your DD can't 'just' lift you onto the toilet, I will get the hoist and we'll take you safely to the toilet, I've been called all the arseholes under the sun, and then thanked by the relative because they felt coerced into doing something they don't want to.
I really hope you get something sorted for the sake of you, your siblings and your mum. 💐

Yes I agree with your first paragraph completely. I think there is a big misconception amongst most people so Alos those that work in care or healthcare that all old people are kindly and lovely and are doing their best and trying to do stuff for themselves. I suppose it's a good thing most people don't have experience of people like dad.

He has no shame or inhibition whatsoever about asking absolutely anyone for help, he's had my siblings and I but also our partners and various neighbours to help him on and off the commode etc at times and he is not one iota embarrassed. He'll keep on and on at mum to phone or ask someone for something and she eventually will. He will take whatever the can get out of you. I think he enjoys the control and feels it is proof of our "love" for him and how brilliant he is if we do something for him.

We couldn't believe it when we found out they'd been having the neighbours round as it's an awful thing to ask of them. He just doesn't care about other people, if they say yes to him that's fine and they'd better do it exactly as he wants or they'll know about it and he'll see what else he can get them to do while they're there. If they say no he'll badmouth them and say they don't care about him and they never do anything and they don't know how awful to is for him etc. I don't event honk he sees others as people, they are tools to be used by him.

I'm glad to hear that if he was in a home they would stop mum doing stuff for him as he would definitely be storing up things to ask her to do while she was there, he'd have her buzzing round him adjusting things and getting him everything.

He has no concept of how risky some of the stuff he asks us to do it. He will ask me to just drag him up the bed because he's uncomfortable, he's 13 stone and very difficult to move because he's so stiff and seized into position. I have to refuse and say I'm not risking injury. Then he'll say "I'll call BIL instead, he'll help me" and we don't want that so we ended up compromising on mum and I pulling him forward and jamming another pillow under him. The problem is if we don't do it, mum will do it herself.

We're at that point where we've said what we're willing to do and laid out options and they don't want any of them and we don't know whether to carry on trying more or withdraw to just providing shopping, cleaning, driving and admin only and let them make their own decisions about care or not and see what happens.

They don't want the help we are willing to give and I keep wondering whether only another fall or an injury will change anything really. But then on the other hand I can't relax when I'm not there either, I feel guilty and really anxious all the time and the desire to do something or sort something for them rises up. I suppose whatever I do I can't be there all the time to stop mum doing everything he wants and potentially harming herself.

Are visitors limited in terms of frequency of visits or just number of visitors? I think if he was somewhere we could talk mum round into not so many visits probably, it might depend on dad's reactions though I suppose, she would be upset if she felt she wasn't doing what he wanted but she would be reliant on us to take her. She didn't really miss him while he was in hospital and visits weren't allowed, I think for her once or twice a week would be enough. How long do most people stay? He uses to want us to stay the full length of visiting time in hospital too which was really boring as sometimes he was asleep or not chatting anyway and we still stayed. We had to invent some pressing reason to get out early so I suppose we could still do that in the future too.

It’s going be hard, I find it hard since care changes. I have no savings at all and just benefit income, yet my income is deemed high enough them take
Huge sums off even though the DWP say “this is the amount by law you need to live on”. My quality live would gone down the toilet so no heating on no extras, no treats. They are ruthless as each council seem
Make up own rules. Hopefully for older people they are more generous.

Is you dad getting attendance allowances? It sucks that’s how it is at present and even after cap and all he has is pension they will be using that as well.

@NecklessMumster

Joint savings are treated as half each....they won't count your mum's half at all as this financial assessment is for your dad, so half joint savings. Mum's disregarded. Yes upper limit is £23250 then a sliding scale til reach lower limit of £14250 after which savings disregarded. But weekly income...private pensions etc also assessed. But only in dad's name. This all due to change Oct 2023 with new care cap of £86000 but I haven't got my head around this yet. It's hard when people have been careful with £ all their lives to change their mindset..I've said lots of times 'this is the rainy day you were saving for'.

Oh thank you for the clarification, sorry for another question, should mum move her half of savings into another account now while it's larger? It would still be a joint account but dad has several accounts (most with nothing in) so could do this easily.

What I'm thinking is they have £75,000 now so mum's half is £37,500 now but if they start paying for care then the "pot of savings" will be reduced and mum's half will be reduced with it before they end up having a financial assessment. Then the pot will get down to say £50,000 and we'll think we're getting close to the threshold for LA funding and will request a financial assessment and now mum's half will only be £25,000. Do you see what I mean, I'm not sure I'm thinking about it /working it out right really.

The social care woman just asked do they above more than £23,250 each, mum said yes and that was that, you're self funding you can do what you like, no visit, not nothing, she didn't even ask how much more that had whether it was 1p or 1 million.