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

[Dottyraindrops]

My brother cares for my mum. When he is away (for up to 2 weeks at a time), it all falls to me.

I have two young children and it’s simply too much. Everytime I do it I become unwell. I have vocalized this and am being firm
about needing carers to help with future times he’s away.

My mum has turned really nasty. Said I don’t care about her, she’s not asking for much, it doesn’t take much of my time etc. She’s told me how nasty I am and she said i clearly don’t want her around and don’t love her like she thought i did. She said this is the lowest point in her life and im being unfair in daring to say I can’t do the ‘few things’ she needs.

This is quite a high level of care in my opinion - dressing/undressing, ass wiping, commode emptying, shoes and socks on and off, cooking meals, cleaning, helping her shower.

How do I stand firm? I cannot do NC as they help me out too with childcare sometimes and I don’t have anyone else to ask!

My children are my priority (my mother finds this hard as she feels she should be my first priority as she did everything for me when I was young).

I've come across this view too, from extended family/family friends etc (not just Mum, who I expect not to be rational as she has dementia) and it's deeply unhelpful. We don't owe it to our elderly parents to prioritise them over our own families- they prioritised us when we were small because it's the right thing to do and you now want to do the same for your children. Not to mention the fact caring for an elderly parent is nothing like caring for young children. When my DC were small I decided how best to care for them and could use a nursery whilst I was at work, babysitters if I wanted to go out etc and set their routines to work with the rest of our family. My Mum (and yours by the sounds of it) has decided that she does not want any outsourcing of care, and wants/needs everything to work around her. Plus of course the fact that over time the DC become more independent whereas elderly relatives become less so and the caring becomes more demanding. I have no time for any supposedly rational adult who tries to equate the two, it just shows that they have no idea what is involved in elderly care and/or caring for children.

Personally, I think that having decent paid carers (or residential care if needed) is also better for the elderly person once they get used to the idea. If some or all of the 'caring' is outsourced there's time for family visits to be social and enjoyable instead of always being in a rush trying to juggle everything, which leads to frustration for everyone. Plus if some care is outsourced before it becomes an absolute necessity there's time to think about what works best and perhaps slowly build it up rather than (almost inevitably) having to make rushed arrangements when either the elderly person's health declines or the family caring for them become ill themselves (which is much more likely if they are burning themselves out trying to do everything). Certainly in my experience, Mum's stance that she wants to stay in her own home and not have 'outsiders' caring for her really means that she wants to not need to move somewhere else, or to have carers. They are subtly different things.

I'm not saying that you should do it. I wouldn't want to. I'm criticising the tone that comes across in your posts when you take about your brother going away.

And the post about not going NC because you need them for childcare is pretty grim.

We don't have your brother's take on this.

Does he want to care for her/keep her at home? Does he do it out of obligation? Is he hoping that this way there'll be some inheritance? Does he resent being her carer?

What does he think about getting either domiciliary carers or investigating care homes? Did she have any money to self-fund care?

This

You are naive, if your brother does the majority of the care responsibilities then he has an absolutely awful life and living there does not make it easier. If you really can’t cope then a real hard discussion is required. I’m guessing your brother lives there because he can’t afford anywhere else? If that is the case he must feel very trapped.

You work from 8-5, so who is doing all this care for her while you're at work? Does DB work or is he with her all day?

Is she really being left for 10ish hours a day unable to toilet herself or get clothes on and off or get food?

I don't see how this can possibly work even if you lived with her if you work 9 hrs a day?

Completely agree. Your children are your priority. Please don’t be blackmailed here. If your brother wants to martyr himself then more fool him. Your mother needs to be in a home.

The sensible thing here would be to have a heart to heart with your brother. It's too much for you, but it's probably too much for him and almost certainly is without your help. So the two of you need to think about other options and it would be better for your relationship if you discussed it together, rather than framing it in a way that he might perceive as you expecting him to do everything without a break.

What are the options if he drops the rope and stops caring full time for your mother?

You absolutely do not have to care for your mother more than you already do, but you cannot expect the childcare in this case.

Is your brother caring for her 24/7 plus providing childcare for you on an ad hoc basis? Is he happy to do that?

My children are my priority (my mother finds this hard as she feels she should be my first priority as she did everything for me when I was young).

Maybe you need to point out to her that you now need to do everything for your children as they are young?

I sympathise as I've had to put my mother into care as she lives 90 miles from me and in a different country to DB. She's not happy.

I sympathise OP. I also have young kids and a mum needing that kind of care. I feel really sad for my kids when I can’t sit and chat with them at bedtime because I need to go get grandma sorted out, etc. We’re kind of finding the new normal at the moment after a big downturn in her health but no way would it be sustainable for me to need to get her up or put her to bed in the long term.

Previously I was up and down the motorway to help her and it would “have” to be at least a two night stay every time; actually it was unsettling for the kids to have their mum disappear for half the week a couple of times a month, unpredictably, and I only realised after they all started displaying stress behaviours.

Yes it sounds like your brother is taking on a lot. But presumably you haven’t asked him to. Anyway your kids deserve a normal life that is not dominated by elder care.

Your brother is doing a lot. Obviously not saying that only women should do caring, but just wanting the odd holiday doesn't sound wrong. Not sure where you live, but attendance allowance wouldn't even cover one visit per day here. Unless you pay extra, or are willing to let them be put in a "carehome", family need to do some of the care. Not easy when we're working full-time and have kids.

Hold on OP , how offered is you brother away for one , but have I got this right you don’t want to help them , but still want and expect help from them and that’s the only reason your not no contact …

@DottyraindropsI’m sorry you’re having a hard time. It sounds really tough but you do also sound like a lovely family!! You’re already helping your Mum so much and so is your brother - and he’s also helping you - and you’re paying for his holiday. I’m sorry your Mum doesn’t get it but I suppose she is getting older and unwell etc. I’m afraid I have no advice on carers etc but whatever you decide, you should feel proud of the way you and your brother are supporting her and each other x

And he'll never have the chance to have a partner or children while he's providing all the care, will he?

Presumably he'd have looked into respite care if he wanted to. These things aren't all down to family.

Then sort out your childcare and insist that carers are organised for your mother.

At one point, I was working full-time and providing all the care for my husband and all the nght-time care for my mother. Mum had severe osteoporosis (had had several spinal and other fractures) plus dementia; DH had hemiparesis following a stroke. Fortunately he was compos mentis, but I had to get him dressed etc before I went to work and also very often had to help with Mum, even with carers coming during the day.

There were times that Mum went into respite care - for example, when I had an operation. Mind you, there was one time I had a shoulder op and the promised respite care fell through.

I just had to manage, though at least I was signed off work for three weeks.

God willing, children become more independent and more able to care for themselves as they grow up. Adults in need of care generally become more and more dependent - except that they're more likely to complain or to refuse to comply with the person caring for them.

You're well within your right to refuse to provide care, but your brother needs respite. As others have said, a carer assessment needs to be made.

Your brother could have a look here for advice. https://www.carersuk.org/

ETA I do know what it's like to run about between two houses and work - that's what I had to do before we could organise to have Mum living with us.

Possibly. Or it might be that the mother is still deemed to have the capacity to make her own decisions around care and the OP's brother has been guilted into the situation by his mother.

I'm trying to understand the full situation here. I'm assuming - possibly incorrectly - that your brother doesn't have a paid job, @Dottyraindrops , and is in receipt of Carer's Allowance?

You can't control what other people do, only your own actions.

If I understand correctly, you don't want to provide care for your mother (and that might mean that someone else will have to take her to appointments etc). You do want some extra help with childcare for yourself.

The only way might be for you to stop paying for holidays for your brother and spending the money on the extra childcare you need.

It then falls to your mother to organise care for herself, if she has capacity. That might mean that she moves into a care home, thus freeing your brother to get a paid job (if he's not already in any form of paid employment - as I'm already assuming he's with your mother nearly 24/7 ).

If she owns her house, then it's probable that it will have to be sold to pay for a care home, although it might be possible for carers to come to her - I'm not sure how the system works in the UK outside Scotland (if you're in the UK), but an income assessment will need to be made. There's a distinct possibility that your brother might need to find somewhere else to live if your mother finally agrees that a care home is the best option.

It's a horrible situation, but I don't see what else can be done.

The other thing to take into consideration is that your brother might not always be fit enough to provide care for your mother.

I recall phoning my husband's daughter to explain that I had a health issue and that if anything happened to me, that care would need to be put in place for her father. Her response was 'You're not thinking of leaving him, are you?'

When I got the all-clear and let her know - but reiterated that anything happening to me would necessitate care, her response was 'But you're all right, aren't you?'

It then dawned on me that the thought that she might have organise care had never crossed her mind. I think that this is quite common in families - possibly because the thought of organising this is overwhelming.

Your brother really needs the carer assessment that's already been mentioned, so that Social Work are at least aware of your mother's needs. That way, if anything ever happens the emergency number for Social Work can be called and they can at least have a record of your mother's medical problems.

I cared for my mum for 36 hours after she was discharged from hospital, I was on my knees after it, thankfully I had to dial 999 as she was unwell & shouldn't have been discharged & she was sent back to hospital. Even with carers 4 times a day it was too much. The time has come for you & your brother to make a decision & involved outside care, either visiting carers or a care home.

She can go into respite care. That’s what my Nanna had to do. My DM needed a break and her DB wasn’t in a position to do, he therefore paid.

A bit of respite care here and there isn't going to provide him with a life where he can find a partner.

That’s correct, he sees caring as his job.

Those saying she can’t be left, she can once the jobs are done, so once she’s dressed etc, she can be. She can wee independently but cannot wipe after a poo so as long as she’s had her poo and been given her meds etc she doesn’t need anyone there for a few hours.

We make her lunch in the morning which she gets out the fridge at lunchtime.

He, like her, does not want outside carers. He refuses to discuss anything with me about her decline and imo, is in denial about it all.

He likes the fact he lives rent free, she pays for all his food and he can do what he wants around the caring.

All you can do is say what is reasonable for you, and deal with the fallout. What you unfortunately can’t do is to control the emotions of others. There isn’t a way to live a reasonable life (full time job and single parenthood is more than enough) and not have your mother lashing out at you. So be it.