How can I stand firm about care for my elderly mum?

So far as my mum was concerned, I recall that we were given something like 4 15 minute slots a day - possibly one was increased to 30 minutes at one point.

We did use her Attendance Allowance and also her savings to add extra.

I had more support for respite care when Mum was still living in her own (rented) home - she had a very sympathetic social worker, but when Mum moved in with me there was a change of area and - therefore - social worker.

When DH came out of hospital 4 months after his ischaemic stroke, we were told that he'd get 4 visits a day from the interim team.

The person in charge of the team took one look at me and cut the visits to one a day. After a couple of weeks they were cut to zero.

At the beginning, when I told her that I didn't know how I was going to cope with looking after two disabled people whilst also working full-time, she scoffed "You're no different from me - I have two children!"

If she ever has to deal with moving and handling two adults, she might change her mind. I acknowledge that dressing a young child can sometimes be difficult. Perhaps she should try dressing an adult male with hemiparesis.

Ref your DB

Carers allowance is £345 per month
National Insurance contributions are also paid
He can work if he wishes to, but there is an earnings cap

This is very little money live on

Many people are carers & live in poverty

Tbf I agree, that's quite possible...

It sounds like the brother is living rent-free with the DM and she is paying for all his food and other living expenses as he views caring for her as his 'job' so doesn't work. They refuse to discuss paid care options. The OP is working to support herself and her children and already does quite a lot to help including dealing with medical appointments at least once a week (which I can tell you from experience will be time consuming) as well as looking after her children. Why should she feel obliged to pay for carers?

Her mother can pay for her own care. The OP is already paying for her brother holiday. Plus herself and her own children

You should be paying for someone to come in if you refuse to help. After all your brother is carrying the burden and babysitting for you as well.

In my opinion, when someone needs help several times a day just to meet their basic needs and keep them safe outside help should be seen as a necessity, not an optional extra. If family and friends are willing to take this on that's very generous of them but it's unreasonable for one family member to veto using paid carers and expect others to take on caring duties without a say in the matter. My brother/mum have done this, despite the fact that Mum can't/won't spend a night in her home alone so needs someone to be with her from at least 8pm-7am every single day, and I am cast as the bad daughter for refusing to do 'my share'.

OP- what do you think is behind your DB's refusal to consider paid care or to discuss you DM's declining health? Is it emotional-not wanting to accept that she's coming to the end of her life and not wanting to upset her by encouraging her to try carers? Or is it more about his lifestyle. Has he perhaps got used to having to financial responsibilities in exchange for caring duties that (currently) give him a lot of free time in the day? Is he perhaps anxious about what he would do if he was no longer her carer? Understanding the reasons might perhaps help you find a way to persuade him to discuss this.

I don’t think anyone should regard full time caring as being ‘an excuse to avoid a paid job’ any more than a paid job is an excuse to avoid caring. Motivations are complex in all families but I do think people’s choices around caring should be respected if at all possible. After all, Trevor Phillips thinks we should all be doing it.

I was doing 24 hour care for my elderly parent... I was awarded 90 mins respite weekly...

As I've said above, the inability to wipe can be managed at home. Fife Social Work has actually provided the toilet/bidet set-up that I mentioned earlier - I know, for example, that it's been made available so someone with cancer.

It's also possible for carers who deal with incontinence pads etc to be organised for someone's home. Whilst unpleasant, it can be manageable.

I'm a bit of cynic, but my impression from speaking to other people who cared for their parents or a spouse at home is that our local Social Work Dept was very keen on keeping people at home provided they weren't living in a bought house of their own - in that case, the council's preference was for the house to be sold to pay for residence in a care home.

I do also know of a couple of people who have used being a grandparent's carer in order to avoid working. In their case, the grandparent was in a council house and the grandchild moved out of the parents' house into the grandparent's home.

It's unclear as to whether the brother is simply avoiding a paid job or not - we'd need a bit more information.

it sounds literally impossible OP. If you didn’t work then that would be different buy I can’t see how you can actually do all that.

you already do a lot it seems. Yes he does too but he’s not working and lives there with no other responsibilities.

I think you do need to stand firm and just say you literally can’t be in three places at once!

Sounds like the brother is using the ‘caring’ to live in free accommodation and avoiding the need to have an actual job.
Whilst also taking holidays at the OP’s expense (in Thailand - perhaps…)
if the mother really (??) can’t ‘wipe’ (???) she should be in residential care even if that mean the brother’s inheritance is impacted and he has to get an actual job.
No way should the OP be guilt tripped into dealing with all this.

Again, a conversation needs to be had about the future.

I'm guessing that the OP's mother owns her own home, but I might be wrong. What does the brother plan to do when he's no longer a carer? Will he still have accommodation or will it have been sold for care or returned to a housing association/local authority.

If the brother is unwilling to consider carers coming in from outside, perhaps the need to consider his own future will focus his thinking?

At the moment, we're being told that the OP's mother can be left on her own, but that's not necessarily going to continue. Given what's been said about her care needs, I'm assuming there must be significant mobility problems and moving and handling issues?

If outside carers come in, then there might be the need for a hoist, etc.

The brother needs to think about how he's gong to survive. I'm wondering whether he had paid employment at one point?

When you say 'the level of personal care is not appropriate' do you mean because it's coming from a man?

It's amazing that you did so much. Full credit to you for that. (I speak as someone currently looking after DM with Alzheimers and pretty much on my knees even though she lives with me and we have carers some of the time.) But full-time hands-on care is not realistic for all of us, it certainly wouldn't be for me. I do what I can but my mental and physical health are not good and all the stress has taken a huge toll. A sense of duty is a great thing but people also have to be realistic about what they can and can't manage to take on, personally, for themselves.

Quite plus while there are clearly costs for the DB it also sounds like there is value too over and above the value that the OP gets from giving of herself in this arrangement.

Accommodation, splitting costs between two adults living together, etc etc

The OP gets the value out of supporting her mother but the costs are very heavy too.

There are likely reasons why the OP’s brother does not want outside help and that can be as little as not wanting the intrusion/restrictions on the day to day routines and/or the financial implications of respite and long term carers. He does not get to weigh up the OPs costs/benefits for her.

Agreed

The narrative is confusing to me. In the brothers world it’s intensive care work; he can’t work and needs regular long holidays to relax (when did OP get 2 weeks holiday to herself l wonder?). But in the next breath OP can easily fit the caring in around her job and children. Which is it?! They both can’t be true

So your db gets plenty of free time during a normal caring day, you get none whatsoever between work, caring and the children and when he’s away you are expected to neglect your children to prioritise her?

That’s so unreasonable.

You need to point this out and get outside help for normal days as well as the 8 weeks he’s away. You can’t go in before and after work and care for young children too. They’ll be the ones losing out. Your mum admits she prioritised you when you were young. You need to point out to her that you need (and will) do the same for your kids.

She doesn’t have a husband; she’s a single parent. She also visits her parent every day.

It sounds like you took on a great deal, and fair play to you for doing so. I think it’s also worth recognising, though, that choices like that can come with sacrifices and consequences of their own.

Those costs may not have been fully reflected in what you’ve written, and I think that’s where some of the guilting towards the OP may come across, even if that wasn’t your intention.

I don’t think that takes away from the fact that you were clearly a very committed daughter, and I don’t think anyone could reasonably doubt that.

Ultimately, every choice we make in life comes with its own costs. You made the choices that were right for you and your family at the time, and the OP is making the choices that feel right for her. Those choices may have involved different sacrifices, but that doesn’t necessarily make one person more caring or committed than the other.

If she had a wash dry toilet installed she wouldn't need help wiping.

My brother lives in another country. There are only the two of us, my mother died years before my dad. I never give it a second thought to be fair, my dad needed me & l was there for him. I would be at his house every morning at 4.30am. Sorted him out, made his breakfast & made his lunch. His neighbour would go into to see him at lunch time & give him his food what l left & a drink. I worked full time had 3 kids, set of twin boys who were 6yrs old and an elder son who was 9yrs old, my husband was a shift worker, helped when he could. I would go every morning, then go back to my dad's house around 7.00pm, made his dinner, sometimes the children would come too. We would stay for a couple of hours. On a Sunday l would have a carer going in, so l could get one mornings rest a wk. Looked after him for 5years and do not begrudge him a minute. Both me and my brother had brilliant parents and an amazing childhood & the least l could do was be there when they needed me. It is only two wks at a time that you are looking after your parent, l do not want to comment further, as l feel sad that you are moaning about two wks care every now & then

I can only speak from my own experience, but being a carer 24/7 was exhausting... and dear God, I wish my darling husband were still here.

By the time we were at that stage, DH's grandchild was at uni and his daughter had taken very early retirement from a high paying job. His son and DIL both worked free lance from home.

There was no way that I'd have expected them to do personal care for their dad, but it would have been nice if they'd offered to sit with him for a day or to take him out for a day to let me have a day to myself. (The only time he was taken out for a coffee was when I was still working.)

DH could be left on his own, but he became very lonely and fretted without me. The final straw was when he scalded himself one lunchtime, making himself a coffee, and sat with a scalded chest until I got home from work at 8 at night. (Mum had died 3 yrs previously.)

That was when I finally decided to request a reduced pension, two years early.

I sometimes scold myself for not being blunt with the kids but then, what good would it have done? I tried to get them to help plan for what should happen if I went before their dad and the response was "But you're all right, aren't you?"

I get it. Life can be shit and no one wants to put their life on hold for someone else...

If the OP's mother and brother won't consider outside carers, then - as I've said previously - the only answer is to stop paying for the brother's holidays and use the money to pay for any additional necessary childcare.

Neither of them are the boss of you, even though they might think so. There are only so many hours in the day and it’s not realistic combined with a job and your children. Are meant to give up your job and / or your children?!

I would stop using them for childcare so they can’t hold that over you and state what you can do. Do not get involved it debated about it. If your brother wants to live rent free, not work and card for your mum then that’s his choice. I also wouldn’t be paying for his holidays

In a previous post I accidentally wrote "The fact that your mum is using a bidet is a bit alarming - they can be rather unstable, unfortunately, and often cause more bother than they're worth," when I meant "The fact that your mum is using a commode is a bit alarming - they can be rather unstable, unfortunately, and often cause more bother than they're worth."

Yes. I've mentioned upthread that my husband's adult children really didn't engage when I tried to make plans for what would happen if anything befell me.

During Covid, I wrote a will and left it on the mantelpiece together with a note of Dh's meds etc.

At that point, DH had just been in hospital for a month. There was a brief period where an interim carer came in once a morning to do personal care, but that was passed back to me once they were confident I could cope. (I'd given up my job by then - reluctantly, I admit - retired two years early.)

We did have his son's agreement that he was named on the Power of Attorney as back-up POA - after my name it was "whom failing" and then the son's details.I'll

I also gave the son and partner plus the daughter the emergency contact number of the local Social Work department and said "If anything happens, you just need to phone them and things will be taken care of..."

I know that it's not as simple as that, but my fear was that if they thought that it was going to mean work for them, then nothing would happen at all. (There were no hospital visits when DH was having open heart surgery and had to be in hospital for a month - bizarrely, they seemed to downplay the severity of it. The son did at least fly up for a half hour hospital visit when DH had his stroke.)

My experience is that relatives often do bury their head in the sand and simply don't want to think about the next steps.

Bluntly, only two things can happen - the cared for person dies before the crisis points arrives or things gradually become worse and worse until no one can cope.

As I said in a previous post, when I tried to hold a conversation with DH's daughter, her reply was "Yes, but you're all right - aren't you?"