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!

You can say no but with your mum's needs your also cannot asked for childcare.

You do seem to minimise your brothers contribution. Everything he does is easy or barely an inconvenience and yet when you do it it’s a huge bind. It sounds like he can’t go out in the evening for example, or in the morning till your mum is set up for the day?
Who does all the cooking, cleaning and gardening? Who does the shopping and pays all the bills? What is the plan for when your mum needs more care?

One thing that might help is looking into the Patients’ Transport Service. That would relieve you of such frequent driving.

There is an awful lot being assumed about how the OP could take control. Again that must be from a place of naivety.

If a person is able to make their own decisions the OP has absolutely no input here. There is no outside agency that will agree with the OPs side here. This is exactly what external agencies want, a family to take the entire burden of responsibility so they are not paying elsewhere.

The contribution from her brother is absolutely enormous and all the OP can do is keep supporting him as best as she can but also setting her own limits.

No more childcare, that is entirely unreasonable given the level of demands on him for caring already.

If he chooses not to use external care, that is a choice so the OP is free to say no to providing respite if it is too much with the other practical demands she has and the brother and mother will be forced to adapt one way or another.

There are options for respite that can be set up in these situations but that is a choice. This situation really runs the risk of carer burnout but that is because of the level of cares needs and the unwillingness to use services that are available so it is not in the OP’s control.

There is literally no way to keep everyone happy @Dottyraindrops don’t even try.

Yep. You clearly dislike your brother, OP.

Why are you minimising your brother’s contribution Op? It isn’t easier if he is living there, effectively his life is on hold. You note that if it wasn’t for childcare you’d consider going NC so suggests it is transactional for you. Perhaps time for a hard look at how to sort out your own childcare needs and then an honest conversation with Mum and brother on just what you are prepared to do or not so they can take any steps needed. Having experience of elder care it is a bit like boiling frog where it slowly gets more and more without time to sit back and consider whether it’s viable.

Your mum will be feeling frightened. Even if it does not show as timid and crying but bolshy and attacking. Fundamentally she has explained she is feeling at the lowest she has her whole life. Because the indignity of having to have people do the most basic things for you, to be so dependent is undignified. And she knows you do not want to be anywhere near her.

It does not have to be all or nothing. There are things you feel you cannot do. Which is fine. Not everyone can. But you and your brother do need to find care for your mother while your brother is away. Either a respite residential or care that comes to her.

It is not a question of whether she wants it or not. It is what is required. Your brother should be supportive, not resistant. And for you, if you are asked to look after her, a carer will be there to support you to do so.

Can mum self pay for that ? Assuming she is still capable to think and manage mind wise you will need to discuss that with her.

If she does not have full capacity, and an assessment will help there as others have said, she will still need the support. It is your mother’s needs that matter.

Your brother should not be refusing support for your mother.

I assume she lives near to you.

In that case, all you can do is control how you deal with the situation and that might well meaning that you withdraw from it.

I don't know quite how it all works, but there are cared for people in Fife who have had automated toilets installed by social work - I think it works a bit like a toilet and bidet all-in-one. Apparently, they're used with very frail people who cannot wipe. I'm wondering whether that might be an option.

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 Mum was in her own place, Homecare wanted me to move her bed downstairs into the living room with a bed in case she fell on the stairs.

Instead, I had a stairgate put on (as Homecare requested), but at the top. I converted the 2nd bedroom into living room and Mum kept her own bedroom and access to the bathroom. Although Mum had severe mobility problems, she was still able to walk to the bathroom at that stage.

I was doing a short commute to work each day, driving to Mum's town - only about 14 miles away - to check on things and then driving back home, about 12 miles. (The worst was when DH had open heart surgery and I had to add on an hour's commute each way to the hospital, but Dad was still alive then, though he had medical issues of his own.)

Mum did need more help as her problems progressed. We managed to build on a wet room adjacent to her bedroom in our house, but she did need help in there.

At the time, I didn't know about the automated toilets that I've mentioned.

I took care of her care between 8 pm and 7 am as well as dealing with all DH's care.

In your case, OP, nothing is going to change until you insist on it. You might have to force your mother and brother into going down the carer route by withdrawing.

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?"

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."

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

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.

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

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

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.

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.

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

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.

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.

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

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?

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.

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!

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.

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