How do you keep going when you really just want to run away?

[SockFluffInTheBath]

Just that really. I've had a bad week, and I didn't want to take over the CC with whining about myself.

MIL has alzheimers, about to tip into the final stage. FIL has some health issues, mostly caused by refusal to look after himself. MIL has carers so he thinks he should be looked after as well, is refusing to walk and laps up the attention from the nice young ladies who are clearly only there because they like him. There is of course a golden balls BIL who comes when it suits him, for as long as it suits him, to do (publicly for praise) what he wants to do. There's an extended family who would love to repay all the favours MIL has done over the years but it's just not a good time. There's one aunt who is amazingly helpful and supportive (care background) but we try not to lean on her as she has her own life.

It transpired this week that FIL has stood down the recent increase in care for MIL because he would have to pay for it. Seems to be cash-poor somehow but the house is worth £600k+ and it must be saved, at all costs, for BIL to inherit. So no extra visits for MIL, and she hasn't been getting fed after 12 noon when meals on wheels comes. FIL has a carrier bag beside his armchair (sainsbury's weekly delivery)- found after a urine mopping session when he refused to be recatheterised- stuffed with biscuits, hot cross buns etc that he's happily munching on all afternoon/evening while MIL gets nothing (waste of money she doesn't know if she's hungry anyway).

I really, really lost it at DH and he went over and read FIL the riot act, in short that if he didn't reinstate the 3rd visit and feed MIL a dinner then we would be calling SS to report abuse. He's reinstated it, then cancelled it, got bollocked again, and it's reinstated as far as we can tell (we live next door). My response is to take a dinner over for MIL- he clearly doesn't need it because 'we don't get hungry in the evening'.

I am raging. I am beside myself and I just can't calm down. I hate everything and everyone. BIL won't force extra care if it's not what FIL wants because knows best, and he doesn't actually give two hoots about either of them. FIL's lifeline goes off maybe 3 times a night (every sodding night) but he doesn't know why despite being told to put it on the bedside table. He calls DH a minimum of 4 times a day because he's weed on the floor, or dropped poo on the floor and 'you need to come and clean it now'.

I work in project management, it's bad time at the moment and I am really struggling to not just tell everyone to f- off and that I don't care. My boy just moved away to uni and it's a lovely thing but I miss him. I just feel angry and empty. I don't want to take time off work because I'm worried that if I stop I won't be able to start again. Part of me wants MIL to go into a home because she would be looked after better than we can manage, but she loves pottering in her garden and feeding the birds. She deserves better than living with FIL who is intent on being a swamp pig who revels in having us all clean his filth. I just don't know what to do and I feel like I am breaking.

I'm sorry, I know we're all in the same boat. God forbid you say any of this IRL, we're all supposed to be honoured to mop wee all day.

I don't have any advice to offer but I want to send you a massive, massive hug and make you a big cup of tea and let you get it all of your chest. It sounds so incredibly frustrating and infuriating, and I'm not surprised you feel so fed up and burnt out. You sound like an absolutely lovely person and I'm sorry that you're own emotional cup has been drained so much. Please look after yourself x

@SockFluffInTheBath here for you. Vent away. It must be so hard balancing both with differing needs.

I don’t want to suggest solutions because I know you’re not dealing with anyone reasonable or cooperative.

Your DH needs to drop the rope regarding of being at his father's beck and call.

@SockFluffInTheBath another hug for you. You have said some lovely and wise things on many threads. It is awful so many of us are in this position. No advice really as I sympathise at the obstinacy. I had a cousin of mine tell me the other day ‘aren’t we privileged to still have our parents alive’. I could have screamed - she might feel privileged but hers downsized ages ago to a lovely little manageable place they renovated before moving into so it was totally future proofed. They employ a cleaner, a gardener and have food delivery sorted. They are both really sociable with loads of interests and hobbies so are absolutely zero bother to her. She also lives 300 miles away.

While your FIL lives in the home, it is disregarded from financial assessments when it comes to paying for MIL care. Likely the care visits are being funded from PIL joint savings.

There could be a number of reasons why your FIL is rejecting a third visit. Either way, he shouldn’t stop your MIL getting the care she needs and is entitled to.

Incontinence is, for many families, a red line (that, and wandering in the night and getting lost). It sounds like both your parents need to go into care because they are vulnerable, cannot look after themselves, are unsafe and no one person can provide the level of care they need.

There is a problem here though in that FIL likely deemed to have capacity to make his decisions. If he gets his way, you’ll probably end up camping there and looking after them full time.

Often, in these situations, it is a crisis that prompts a positive change. For this to happen, you need to step back. If you are stepping in to solve poo problems during the night, visiting care workers won’t see the full situation.

I work for the local adult safeguarding team. Please get in touch with social services. It's not fair on your MIL to be left like this.

No one will get in trouble. We're here to help and we've seen it all before. Sometimes a good chat with a professional to lay out the issues and discuss concerns is all that is needed.

I don’t have any words of wisdom, but wanted to send a hug.

Oh @BlueLegume how hard you must have bit your tongue. People who haven’t been at the coal face of this cannot understand. I am dealing with everything DF didn’t do to prepare for later life, which is like he has died but worse - he’s still with us and so angry with me. I know my efforts have saved his life and his legs this year. It has cost me a lot in all sorts of ways and does not feel like a privilege in any way.

@SockFluffInTheBath the feeling of just wanting to run away resonates with me. I’ve had to make all the hard decisions and many times have had to ask myself how I keep going. In a moment of madness years ago, I looked at buying the house next door to DF. I didn’t but I do recognise that having the situation you’re dealing with right next door is not convenient (or a privilege!) either.

Also would say a safeguarding referral via social services, she is at risk from him and her basic needs are not being met. Does she have capacity?

Sounds like you're approaching carer burnout. You should step back and get Adult SS involvement. It doesn't help anyone if you go down. Are there PoAs in place for PILs?

This sounds really really hard.
Maybe it's time to take a step back and prioritise your own needs. If you reach burnout that will be a very bad thing, including for PIL.

A break is probably exactly what you do need and I think you should take one. A two week holiday for starters. Talk to social care and let them know that you need to prioritise your own health.

Echo all the advice from other posters .

@RhubarbAndCustardSweets is correct .. your duty is to MIL who has no capacity and no one else advocating for her .

She needs to be in a care home being looked after .
Enjoying her garden in no way compensates for the lack of basic care and food etc .

I had to be the “ bad guy “ in that situation but I can live with it as my relative is thriving ( as much as the elderly an ) with the right care in the right environment.

Take care x
You sound lovely but you’ll be no use to anyone including yourself if you don’t take care xx

I think FIL would be better off in a home. He’s not managing, for whatever reason, to look after himself. (Mind, if he’s been living with a wife with dementia for years, he’s probably a bit fed up of life too).

I’d then consider whether MIL could cope with carers for another few months or a year to extend her time in the garden. She’d have long periods unsupervised but it seems he’s not doing much supervision now.

On the other hand, if she were in a care home she could still have a bird feeder, and a garden she could look out on.

Persuading them both into a care home could be an advantage over just one of them, because the house would be taken into consideration and they’d become self funders and have more choice of home (not necessarily a better home).

whatever you do, prioritise first your health, next your job and next your friendship circle. All these are essential.

The worst part here though is that just getting MIL into a care home means FIL is still there being demanding, refusing solutions to the continence problems he is having that are making everyone’s lives difficult.

I agree social care should step in here but I imagine living next door makes it much harder to get social care to get seriously involved.

@MereDintofPandiculation has sugggested all the right things here, I think.

Would planning a holiday and break help? Even better if bil is booked in to step into your roles!
I have found making a list of what I am and am not happy to do has helped keep boundaries. e.g. I am happy to cut fingernails but mum needs to pay for chiropidy for her feet.

Please safeguard this, in my line of work we see this all the time. She needs a social worker and so do you! There will be an online form on your local authority website. Just fill it in and send it. Its abuse via neglect. Please DM if you need a hand.

Unfortunately while there are caring relatives around masking the true extent of spousal neglect it wont be seen or dealt with appropriately. Unfortunately you need to step back for the greater good. Draw the line now. This is a not fair, and not sustainable.

That is abuse of your mil
You need to do the right thing and contact ss ,and tell them everything you have told us .
She needs to be in a care home ..full stop ..

I wonder if FiL is developing dementia too?
OP this sounds really hard, but they would both be better off in a home.
I think the suggestion for you to go on holiday with DH and have BiL step in, maybe even staying in your house , to cover for you sounds a good idea. Make it at least a fortnight. He needs to be onside.
Alternatively you could try diverting calls to his phone so that he gets the picture of how often DH is called during the night.
What exactly are FiLs health problems that mean he is pooing on the floor?
Is there a reason why he does not have nappies?
It does sound as if MiL is being neglected so I think you do need to involve SS at this point.

Did you say anything to her, or were you stunned into silence??

Your situation highlights something that we’ve had to grapple with in the past: the assumption that the spouse of a person in decline / needing care is the appropriate person to provide it.

If the appointment of a carer required an application/ interview process, your FIL (and mine) would never get the job in a million years. FIL wasn’t anything like as dire as yours sounds but he was wholly incompetent - couldn’t understand her diagnosis (and denied it), constantly muddled her medication, didnt ensure that she ate / drank enough, failed to anticipate risks and hazards at home, did nothing to prevent falls 🤷‍♀️, made lots of poor decisions along the way. But because he was the spouse and at home, everything went through him, he was ‘in charge’. It made DH / SILs job of trying to get appropriate care in place a lot harder having to constantly bargain, negotiate, explain, argue with him as well as negotiating the complex care system and grieving their rapidly declining mother.

sorry I don’t have any advice: mil declined rapidly and had to go into a home in the end, partly as a result of his poor care but it would have happened anyway.

OP this sounds incredibly difficult.

Re putting MIL into a home, care homes often have lovely gardens where she will be free to garden and potter. They will feed her at regular times and take the strain off FIL and you.

If FIL only has himself to look after, perhaps he will do it a little better? And if not then SS need to deal with him or else he can live in his own squalor. Seems harsh but you are clearly at the end of your tether with it all.

Just so much sympathy from across the pond with my 92 year old parents.

Is there a reason why he does not have nappies? Wish people wouldn't call them nappies! Demeaning.

MIL might still be able to stay at home with 4 carers a day, it's FIL that it seems to me would most benefit from a care home. It's up to him as to the state of his house if only he is in it, but the pooing and weeing everywhere means he is6 unable to keep himself safe. And not eating in the evening.

Take away his carrier bag of food? Rescue her and get her into care and let him rot.

A friend’s mother (combination of severe malignant NPD (diagnosed) and dementia also almost entirely stopped moving ir caring for herself and demanded her daughter do everything for her. She wasted away and stopped walking entirely. Ended up in rehab and was taught to walk again.

He will not maintain his independence for ling at this rate. Stop propping him up. Limit your care to her.