How to set boundaries when caring for a demanding elderly parent

[IAmNotALoon]

Please help me cope with the totally unreasonable demands of my elderly, poorly and frail mother. She had been ill lately, so I've had to move in with her to look after her ( this has happened about twice per year over the last few years). She expects me to be a 24/ 7 carer. And I mean 24/7. She has decided she doesn't like my husband, so I shouldn't spend time with him. She has decided my children can cope without me ( they are older but have specific needs as well). She wants me to spend every minute of my life with her, unless she gives me special permission to do something else (for example I attended my youngest child's parents evening recently but it was clear she was unhappy about this). She has form for controlling behaviour, dating back from my childhood. She won't have a sensible discussion with me but gets spiteful and upset if I try to discuss balancing my needs and my family's needs with hers. I am exhausted because she sleeps poorly at night and disrupts my sleep. She has plenty of money and capacity but won't discuss getting some outside help. As time goes on the demands are getting more unreasonabl and I need an advocate who will sit down with us and work out a reasonable compromise.

I'm really sorry OP. There is an awful lot on here about setting boundaries and making a choice but if you are in the thick of it that can be really hard to do. There can be an awful lot of guilt involved too as you may have loved / feel you should love the elderly person.
My FIL was a lovely man for many years; kind, funny, cultured and clever and a very loving father and grandfather. But last year was really hard as he became frail and so demanding. He had a fall and moved in with us for a fortnight, which then turned into five months because he needed care 24/7 and was not safe alone. He was eventually well enough to go home-where he longed to be (3 hours from us) - and died in December after another fall and a short final illness.
He was utterly intransigent about having carers in for anything at all but seemingly quite happy for his sons (and daughters in law) to hold all of the pressure. It was exhausting and we were told to 'drop the rope' by people and to see it fail, but we just couldn't.
FIL had no signs of dementia but something changed in him. The FIL I knew from five years ago would have been horrified by the person he became in his last year.
I have no advice, just sympathy. You might like the cockroach cafe thread for ongoing support. It was invaluable to me last year.

Many posters on here swear that they would never do this to their children, that they will never put a burden on them or expect them to give up their lives. None of us can truly know how we will feel when we are 87, scared, frail and losing our awareness and memory. I would imagine that the survival instinct kicks in and people do whatever they feel will work, to get them looked after. Going to strange or unfamiliar places, letting unknown people into our homes - all these go very strongly against that instinct. It’s not necessarily a rational decision - I think rationality goes out of the window when one’s back is against the wall.

You need to move back out and she will have to get carers in.

But what if she won't get carers in? What if she falls and breaks something? What if she won't wear a fall alert alarm? What if she turns the cooker on and doesn't light the gas?
You may be underestimating the utter intransigence of an elderly person. OP is probably already feeling very guilty and the thought of more guilt is gut wrenching. Someone wiser than I said you "have to choose between guilt and resentment" and sometimes it feels less painful to choose resentment.

Move out today

Ring Social work and explain your concerns about her but make it clear you are unable to look after her

Have set times that you’ll pop in, for a short period, maybe a couple of hours a couple of days a week. Stick to these times

She’s an adult. She’s not your responsibility. She’s obviously making poor choices, but those are hers to make whilst she has capacity

Stop feeling guilty!

get this book and read it 😊

Those are all her choices.

If she chooses to reject all reasonable options then it’s on her, not the op.

There is no cause to feel guilty

I’ve been through this with two parents and an aunt. Intransigent and difficult, rejecting help, it’s sad, but their choices

“I'm needed at home some of the time”

OP, I should think you’re needed at home more than some of the time. Your DC deserve your presence, as does your DH. When your DC leave home and don’t come back because you were never there, how will you feel then? What sort of marriage is this for your DH? I’m not minimising the fact that your DM needs help, but at the moment, it sounds as though you’re her slave. This really is not OK, OP, and it seems that she’s conditioned you to believe that her needs come before everyone else’s. They really don’t, and they particularly don’t come before your needs. You need to be able to live your own life, and that has to include drawing back a bit from your controlling mother, and putting some sort of care package in place. Of course she doesn’t want other people in the house if she thinks she’s got you where she wants you, but your DM is going to have to e
wake up to the fact that you have a family of your own, and the responsibilities that go with that. Good luck, OP - it’s very easy for us to write things in a forum, but much harder for you to implement them in real life. But I do think, if only for your own sanity, you are going to have to make some changes, and the way to do it is simply not to be so available for her.

Can you explain exactly what care she needs (and what she wants if you can distinguish)? Perhaps post what you’ve facilitated on an average day.

It is commendable that you want to care for your Mum. To do this over any kind of extended time period, you need to be well enough. This means you need enough sleep and you need to maintain your own mental equilibrium which means being with your DH and children as well as with your Mum.
No paid carers work 24/7 and so you must not expect this of yourself.
Ideally go home to your own family and plan a visit schedule. Try to ensure that this is not at your Mum’s house all day and include shopping/other errands/ breaks as well. Plan a short break with your family and use this as a lever to get outside help integrated into the overall plan. Don’t let your Mum veto this.
There’s a thread about MN phrases running - and the one I’d use here is ‘You can’t pour from an empty cup OP’ - please be kind to yourself.

OP

Kids come first.

They need you at night. They need you to tuck them in and wake them up. They need you to ask them how school was. They need you to be a role model.

Your mother is an grown up. Her life, her choices.

Take yourself back home to DH/DC. If she needs support you can help her put it in place. It doesn’t need to be you.

I have some understanding of what you're dealing with in regards to your mother. I have watched friends dealing with elderly parents along with their various health needs. I have seen parents physical or mental health failing or their cognitive decline. They don't want a falls alarm, key safe or to have career's and as for going into a nursing home they don't need that because there adult kids mainly one person can mind them.

I have a friend who did several weeks of caring about 3 years ago for there mother after she had a bad fall. There siblings did as little as possible then also. There mother had no appreciation for this help. Now there mother has some cognitive decline and has said a few things about her long term care.

My friend spoke to another friend who ended up as a carer.
The friend said to them to get a part time job even for 2 or 3 days a week and let the other siblings step up to do caring or to arrange career's for their mother when the time comes.

My friend has heard about an upcoming part-time job and is getting a CV ready for this. They have decided to do this for the extra money and have a boundary in place if or when there mother needs care.

The reality is that you can't put your life on hol,leave your husband to do everything at home and with your kids when your mother expects you to mind her 24/7. As she declines it will get worse. Say to her mother you need careers, cleaner, gardner ect or what ever is accaplickable in order to stay at home long term. Get a family member or say an aunt onside and tell your mother in front of them what's needed now for her.

Your priority is you, your kids and your husband and this is not being selfish but being realistic. If she wants to remain at home she makes changes and gets in help to enable this. If she has money it now the rainy day that she saved for and it time to use this money to make her life easier going forward.

Then that is her choice. OP isn’t responsible for her mothers actions. Why would she feel guilty?

To be blunt, you tell her to fuck off and move out. And don't answer the phone.

I do know how hard it is, it took me some years to mentally escape from mine. You start by using your own agency to make some choices.

Have a list of positive choices you can make for yourself and your own household. Stick to them. Get your life back.

This is not going to be easy because all your life you've been trained by her to do what she wants. She is going to complain, create dramas, try and get over your boundaries. And she knows how to push all your triggers.

To mix metaphors, you need to run for the hills while sticking firmly to your guns.

OP please take a step back. If not for your own sake, for your children’s.

At Christmas I heard from an acquaintance whose mother died last year. The daughter had moved in during the first lockdown to help her out, and ended up staying for five years. In that time her children grew up, and one left
home. She’s missed out on a big chunk of their teenage years. She’ll never get that back thanks to an utterly selfish elderly woman who refused to contemplate going into a care home.

OP it's really hard. We're the first generation whose parents have lived so long in a state of frailty while we're expected to keep working ourselves until close to 70 years old. There's no roadmap for this and in fairness to your mum the balancing act required is not one she has had to do herself so she doesn't have personal understanding of it. Plus there's no coherent or consistent national strategy for elderly care - it's piecemeal and not always good quality.

That said you can't continue the way you are. You need to conduct an assessment of her needs - either through social care or directly with an agency - work out which you are ok with meeting and hand the rest over to them. It will probably need adjusting as time goes on but at least it is a start and will get you back into your own home.

Because it's her mum! All very well in theory to say "just leave her to die then" but it's not that straightforward.

No you cant just leave them to it. Its difficult. We learnt though have boundaries tight or be run ragged. I feel the life sucked out of me some days when I visit

Oh OP she sounds manipulative. As others have said leave and go back home. You have to look after your own wellbeing because other wise you are just going to get poorly.