Would this level of caring for a parent be too much?

[Overwhelmedandneedadvice]

If what is described below was your personal situation, would you be happy with this level of care for a parent (currently early 70s) until they die?

Current situation:
-Parent is 73 and has a degenerative illness that will affect them till they die
-You’re a single parent to two small children and expected to care for said parent every day (you live 5 mins away) as well as run your own household
-they won’t accept help from outside carers, only you and your sibling
-they need help with dressing and putting on shoes and socks
-help with toileting including wiping them after a poo and emptying their commode
-household chores
-cooking/food prep
-taking to weekly appointments
-getting ready for bed
-cannot go out alone so have to accompany them if they want to go anywhere

I’m sure there are other things I’ve forgotten but that’s the general gist.

If this was your life for the foreseeable future, would you feel happy to do these things and plan your life around them? If you make plans, you’re asked what time you will be round to help them.

Things like holidays have to be arranged
In far in advance to the other sibling can be there.

YABU: I would be happy to do these things daily for my parent
YANBU: I would find this too much - if this is your answer, how would you distance yourself? When I’ve said i feel like this is too much, I get lots of crying and guilt tripping making it impossible to back away, even a bit.

Agree with most other posters - ring social services and refuse to continue caring
My DM has Alzheimer’s and still lives alone with carers twice a day - she also goes to a day centre a few times a week
I do her shopping, take her out for coffee and respond to calls when she’s lost her keys, messed up her drugs, tv won’t work, had a power cut etc - so still see her very frequently - it’s exhausting

You have zero duty to take on the care of a profoundly disabled adult for two decades.

You can’t, anyway, it’s too much work for one person.

Your mum isn’t talking sense.

Yes the “capacity” issue
this is why you need to be at the meeting so that when they say what about meal prep and parents say oh xxx does that you can say well the reason we are having this meeting is that it’s not sustainable!!
we had that with my Dad when he was alive but the social worker was amazing and in the end Dad loved the carers coming in as it was extra company for him.

Middlemarch, that’s awful. OP, don’t be Middlemarch!

Of course it’s all far too much, sorry you’re going through this.

YABU to say ‘I get lots of crying and guilt tripping making it impossible to back away, even a bit.’ - the crying and guilt tripping is not making it impossible, you are. You are suffering from over-responsibility. Simply put in a boundary and say no. It’s very freeing.

She is being selfish. You need to say no op. You have kids to think about, a job, and your own life to live. Put carers in place and step back. If you don’t, you’ll be doing this until the end of time op, she’ll happily let you. Being a martyr won’t do you, or your kids, any favours in the long term.

I'm now on meds to reduce physical symptoms of anxiety too OP. I've had counselling to help talk about how I was feeling and that it was OK to be cross/frustrated/angry/sad at my DMs behaviour. I've also stacked on weight (dealing with menopause on top has been no picnic either!) and I can't shift it. I've taken my foot off the pedal now and whilst I still do stuff for both DP's it's nowhere near what I used to. Whatever I do for DM will ever be enough anyway...

Someone said on a similar thread...if you feel resentment (for all the stuff you're doing for your DM) or guilt (for all the stuff you say no too), always ALWAYS choose guilt.

if I had tried nicely then I’d be very blunt and tell my parent that I’m not doing it. I’d say I will do this for x amount of days to allow SS to find a care agency, after that I will be stopping. If you refuse outside help that’s your choice but not my problem. I love you and will be here to support but you need to accept carer support

Also if you stop offering that support and they don’t accept it, honestly it would quickly become a SS issue anyway as she’d be at huge risk of self neglect and that’s a safeguarding issue. It would mean standing your ground though. Maybe you should book a holiday to force the issue. This is all easier said than done obviously, as you’d need to let things get to crisis point but your only other option is burning yourself out at the expense of you and your children

It was too much for us with mil & she he a husband and we had older (16 & 18 at the time ) kids, albeit both with SEN.

It came to a head when father in law was taken into hospital. Mother in law ended up in a home.

🤣

OP your body is saying you need to step back, listen to it. It's not reasonable what your parent is asking of you and your sibling. Your parent got to live their life and enjoy everyday family life, it's not fair they are asking you and your children to put yours on hold.

My friend did similar and it was a disaster. Her dad ‘didn’t like anyone else in the house’ and so she couldn’t have day off, never mind a holiday. It was all consuming and shrank her life, her children were older and it meant she turned down opportunities to see them and travel with them.

He’s died now but in the years she cared for him she worked loads less and has struggled to regain employment. The effect on her pension has been catastrophic.

My friend was like you until the day her back went lifting mil out of the bath. Then they were both in a pickle.

I suggest you talk to your GP about how to handle this situation, who to contact for help. Your mother is young to be this infirm.

Assuming you work, how flexible is your employer? I would say it is hard to do alongside work, though to be fair "proper" carers from agencies spend a lot less time/do a lot less for their service users than any of us would want to do for family.

You absolutely cannot continue like this. You are a single parent with a job. Your priority is your children and yourself. If your circumstances were substantially different then maybe a significant amount of your mother’s care could be managed - but this is not sustainable. Call adult social care tomorrow and get the ball rolling with a care needs assessment. Make it abundantly clear that you are unable to provide consistent care yourself.

Yes im very sorry and agree with others, this is not sustainable. Its not only already affected your health, this is compromising your current earnings in a pinched economy, it will be affecting your pension and very likely your future employment prospects if you are unable to make what progress you can in the workplace. It sounds like your parent is really minimising it all. 5 mins here, 5 mins there...........except it clearly isnt.
This is also bound to be affecting your capacity to be a mum as its so exhausting and you are a single parent with no other help.

I would talk with your sibling and explain you cant go on like this. Others have mentioned, ask for an adult social care assessment for your parent and apply for attendance allowance and use that money for carers. It is not reasonable to say they dont want anyone outside of family..... So just say no you cant do it anymore.

It sounds perhaps like it might be hard for you to advocate for yourself with your parent....... If you need to make something up (for example, the gp advised that due to your anxiety and the health problems,( eg you are not sleeping/your blood pressure is alarming /you are getting debilitating migraines etc,) you are now experiencing, they have recommended you step back as a carer for at least 6 months), then dont be afraid of doing that. We are not dealing with a reasonable person here so do not hesitate to take an easier route to where you need to be, which is back in your own home. It doesnt really matter how long you say you need a break for, getting out of this will help you feel strong enough to resist getting pulled back in. Set a boundary of anything you can still do..... You are only going to be able to visit on a sunday or twice a month from now on for one or two hours, for example.......

The thing is, you are sacrificing your energy and your mental health, but carers can equally fulfil everything you have been doing.

What parent who is loving or fully compos mentis would expect this from their daughter who is a single parent mum running her own household?

Something to also consider: do you think its possible that the degenerative disease or some other, as yet undiagnosed condition could be affecting your parent's judgement and understanding? (they cannot and wont ever ever understand how much this is taking a toll on you) It might be easier for you to stand up for your right to have your own life and to have greater presence in your children's s lives, if you can perhaps consider that this could be a genuine possibility. I hope your sibling will support you in this. I think for this to work you are both going to have to agree, otherwise the sibling will be lumbered with all of it, and it will be them breaking down next.

All the best.

so hard for you

the ‘win’t accept care from anyone else’ is putting huge guilt and pressure onto you.

that his their decision to make and he is entitled to do so -

BUT it doesn’t mean you have to do it!

you need to be realistic how much or how little you are able and want to do - set your limits and that is that. You have to think about your own family and your mental health too .

you ask social services to urgently do both a full care assessment on your parents and a carers assessment on you and your sibling and in it you state emphatically exactly what you can / can’t do .

you can’t allow your own life to be dictated to by others.

your parent may not be happy with the idea of outside care but you have to be kind but gently firm that you are not doing it all and show them this is not going to happen and that they have to be open about accepting outside help.

best of luck in such a hard position but you have to stay strung and be firm about how much you take on .

You say you “have to” spend every day at her house and your mother “wont have people in the house”, but those are choices, not unavoidable certainties. You have to make your own decision about how you want you and your children’s lives to be- though I must agree with the others that this won’t be a positive thing for your children or you. Maybe think of it like this: you’re currently putting your mother’s wants before your only experience of raising a family, and before your children’s only experience of childhood. She’s in a situation where she needs care, but that does not mean you have to provide that care. It’s very difficult but I promise it will be so much easier once the boundaries are firmly in place and alternative arrangements made.

DF was similar - my dc were 5 & 6 years old, I lived an hour away, worked full time etc. It just wasnt possible for me to take on all the caring tasks, either financially or for my own DC sake.

Stop looking at it as a package. It iant do everything or be the devil himself. Be honest - what do you feel able or grudgingly happy to commit to? For me, it was a weekly visit, online Wiltshire Foods order, doing laundry, not much scope for anything else. So then having a 'cleaner' (aka a carer) in each day was essential. "I've arranged xyz to pop in to clean up a bit" was the polite lie we went with.

So you're financially disadvantaged by doing this, too? Having to go part time?

No, you can't carry on with this. You and your sister need to make a pact, and do everything you can to set up a support system from social care. Once you have it in place, you both 'get a virus' and can't help, and the carers have to be called in

And she WILL accept care, if you and your sister don't do it. She's not going to lie there and starve, lying in her own faeces. The carers will arrive and she'll let them feed her and clean her.

I’m sorry but they need external help. This is far too much for you to deal with.
Does your sibling help at all, or is it mainly yourself?

If you were in a position where you didn’t have to work, and you were happy with this level of support, then all well and good, but it doesn’t sound like this is the case.

Be kind to yourself and your children and reduce help. You can support your parent by helping them seek outside help.

I am retired and have a lot of health problems. One of my main aims is for my AC not to be burdened with this so I enlist all paid help where I can and have installed aids that make life easier, e.g. stair lift, shower seat, grabbers etc.

My AC do help with some things (e.g. one came over at her own suggestion to put in a couple of plants for me - in return I gave DGC a music lesson), and they include me in outings where they can to make it easier for me to be out and about.

I do not require anywhere near the level of care that your parent does - I can find ways round most problems myself - but my AC know that I do not want these sort of care needs to fall to them and that I will obtain bought-in care if I was in that situation. In that way I can continue to have good times with the AC rather than them being overwhelmed with caring for me. They are all busy people - with work, family commitments and (equally important) enjoying themselves and living life.

I think that your parent is asking too much and there needs to be a way of discussing this with them. As others have said, Adult Services can make a full assessment of needs and suggest what they might be able to offer.

I can see this a difficult subject to broach but hope that you can find a way.

OP, this is utterly unsustainable - you are taking your own DC’s childhoods away from them, disadvantaging yourself financially by having to go part-time, and allowing your parent to take over and own your life. It is monstrously selfish of your parent, and you will burn out or have a breakdown. You need to step back. Intimate care is not a reasonable ask from a parent, except in a dire emergency, and your parent needs the assistance of carers. You are going to have to step back, and you and your sister will have to come up with a plan for how to do this so that your parent doesn’t play one of you off against the other. It sounds like an absolutely nightmare scenario, OP. You deserve to be able to live your own life, with your own DC in a normal family atmosphere, not everyone putting their own needs behind those of a selfish parent.