MIL really struggling post-surgery - how to help?

[Gherkingreen]

MIL is 80, lives on her own rurally, we live 6 hours away in one direction, other family members 5 hours in the other direction.
She's recently had major bowel surgery after years of severe diverticulitis and infections & has a stoma.
A carer currently visits once a day to help her get washed & dressed, but she won't ask them to help her wash as she's embarrassed by the stoma. The stoma nurses visit once a week but it's still v early days & she's finding the whole thing very difficult to manage between their visits (emptying it, sore skin, accidents etc), not to mention the psychological impact.
She can't stand for more than about 30 seconds (on list for hip replacement) so struggles to even heat up a meal in the evening.
She has restless legs at night which is preventing her from sleeping, so is feeling dreadful. Her GP prescribed medication but she's afraid of side effects so doesn't want to take it. We've got her some magnesium to take & epsom salts but her reduced mobility means she can't safely fill & carry a bowl with warm water to soak her feet before bed.
We're going to call social services tomorrow to see if they'll reassess the care package in place with a view to getting more support in place. The care provider says she seems to be coping (as MIL won't ask them to help, she says she's got it all under control) but we disagree.
How do we try to help her get the support she needs so she can stay at home as she wishes?

@Gherkingreen I’d advise that you call social services and use the phrase “she is at high risk” of not coping..not eating properly…?if she’s lost weight then tell them that too. You need to emphasise how worrying her situation is. Would she accept more care? Could you arrange that privately until she can be assessed by social services?

Thanks for replying @teaandcake123 - she's not eating much at all and has lost a significant amount of weight in recent weeks (says she feels sick/doesn't want to deal with the stoma etc), she can't shower/wash properly and definitely can't prepare a meal. In our eyes, she can't manage her basic needs.
The hospital assessed her as needing 1 visit a day for a maximum of 6 weeks after discharge following the op (think we're on week 3 now), will take your advice and call SS tomorrow to see if they can help.
Whether she'll accept help is debatable - she thinks if she asks for help, she'll be seen as in need of more intervention which in her mind is a care home - of course, we know that's not the case but there's no convincing her otherwise, so she says everything is fine so's not to draw attention to the reality.
She may be able to use some of the benefits she receives to pay for additional care short term but she doesn't have savings/property.

Your poor MIL. That's miserable to read.

What does the stoma nurse say? Would your MIL let you talk to her?

What do you think your MIL would like? Would she really prefer to be in hospital still? Would she consider respite care in a home? I have had some better responses to calling this convalescent care?

Or would she really want family to help? I'm normally pretty stonehearted on here but is there anyone who could stay with her for a week or two?

I know it's only a small piece of advice but re her restless legs...a small weighted blanket has made a massive difference to me after years of it making my life miserable.

Thanks for replying @PermanentTemporary, she's in a pretty awful situation and we're trying to navigate the health/social care system as best we can - the stoma nurses have been excellent and we are in contact with them by phone; they're understaffed and under pressure to meet the needs of their patients so can't physically do more than they are, but they'll phone her too and she can ask for help any time.
Her daughter (who lives 5 hours away) did stay with her for a week post op, and she MIL did seem to improve a little bit as soon as she'd gone, went downhill again both physically and psychologically.
We had hoped MIL could be supported with a period in a convalescence place after the op but it wasn't offered. We might try again.

@Houseplanter I'm sorry you've also suffered with restless legs, it sounds so debilitating. That's a great call, thanks for suggesting - will get her a weighted blanket to try. Have you had any luck with anything else? Thanks for your message.

I know it's only a small bit if what you said and I hope you get her the support she needs but you can get magnesium cream which means she won't have the issues of trying to use Epsom saltS

can she take magnesium supplements? I take 100% rda of magnesium as pills just before bed and it knocks out my restless legs completely.

also maybe you can convince MIL that if she will engage with help in the home for cooking and washing it will keep her at home rather than having to go to a residential facility

I'm afraid the convalescence would definitely be in a nursing home.

It is expensive though. Round here an absolute minimum of £1000 a week and tbh the only ones I would consider for a relative are £1700 a week.

Getting more private care is a good idea I think.

@SeaToSki we've started her on some magnesium so hopefully that'll start to have a positive effect soon - thanks for suggesting!

@PermanentTemporary the costs are phenomenal aren't they?Unfortunately it's not affordable for either MIL or us.
My DH (her son) stayed with her on and off during her illness prior to the operation when he could WFH during/post pandemic but his job is now hybrid and he's frequently overseas so doesn't have the flexibility to stay with her.

I tried everything to try and fix mine.. used to reduce me to tears tbh. The weighted blanket is something of a miracle.

Your poor MIL. She really needs some rehab doesn't she, before things deteriorate further.

Really hope things pick up soon.

@SeaToSki we keep gently suggesting that living at home with support is the better option for her, but she needs to engage and ask for help rather than tell the care team she's okay and doesn't need any help - she's firmly in the mindset that asking for help us a slippery slope towards a nursing home - whereas we and you know it's the opposite!

Tbh I would stop gently suggesting and beca bit bossier! But it's so difficult when they are struggling.

If MIL is taking magnesium and/or epsom salts it could have a laxative effect which she doesn’t need with the stoma and she needs to be following the dietary advice from her Drs. It could also have the effect of upsetting her electrolyte balance and potentially causing kidney damage.

Whilst family props up the situation and she declines to ask for help, I'm afraid social services will largely leave you to it.
Living rurally won't help.
What were her plans for coping as she aged?

A friend has recently had same op. Good few weeks before walking unaided. She was given a zimmer and sticks I think, and some sort of trolley with a tray. Has your mil got any mobility aids which will help? Has she a flask which carer could fill up, also can get food flasks now.

This is the hardest part, if she tells them she's fine and coping they need to accept this as her choice and can't put care in if she won't accept she needs it sadly.

Completely different medical issues but my in laws can be like this - put on a brave face for professionals and minimize issues. I have had many conversations with them about telling hcps what things are like on a bad day rather than a good day.

Thanks all, really appreciate your comments.

@Fraaahnces We've spoken to the community nurse about the magnesium, thanks for the info though, v important not to knock things off kilter for her right now!

@StrongTea We helped her get grab rails fitted and she does mobility aids like a wheeled walker, standing stool and grab rails.

@tokesqueen Her plan? To age in good health I think! But yes, future planning for an aging population is essential.

@PermanentTemporary I'm more of a firm talker/tough love person but my DH and his Dsis aren't - and she's my MIL not my DM so it's harder for me to step in.

@Danascully2 @MyGooseisTotallyLoose yeah it's the hardest part I think, trying to help her to see what she needs to do.

She won’t let the carers help her wash, won’t take the medication the gp prescribed and insists all is well. This is a recipe for a crisis. Either you speak more plainly to her, or you let the crisis unfold and deal with the consequences.

I have become the Plain Speaker for DH and BIL when dealing with the PIL. Works for us.

You're not wrong @olderbutwiser - it's very difficult to navigate but someone (me) probably needs to step in.
I'm one step removed and can see things more clearly than DH and SIL are willing to accept.

I’m just reiterating what pp have said but you could increase the care package to the maximum and it won’t make a difference unless she accepts help. They can physically put the meds in front of her but if she says no because she’s worried about side effects there’s nothing they can do. Same with washing/helping with the stoma. It would be a waste of everyone’s time for them to turn up and her decline everything- and the package would be cancelled after a few weeks due to not being needed.

I’d sit her down and have a firm chat about everything, unfortunately things are only likely to get worse from here out- she’s 80. Do you have power of attorney set up? Do you have a plan for when she’s unable to care for herself/ leave the house given that she is so far away from everyone?

I’m not trying to be harsh but I see this from two angles (I have 80 year old parents and I’m a nurse.) The number of elderly 80/90 year olds coming through a&e after a fall or ‘off legs’ who refuse a nursing home or support and go home to bounce right back in after another another fall is huge. People need to take responsibility for how they will get by as things like mobility and independence lessen, and being 4/5 hours away from her only relatives is a bit of a recipe for disaster.

It sounds as if she needs an occupational therapy and Physiotherapy assessment to make sure that she has all appropriate equipment to help her manage at home - perching stool, in the bathroom and kitchen, shower seat, kitchen trolley, walking aid.

carers at home can usually be up to 4 times a day - so to support with morning routine and breakfast, lunch, tea and bedtime.

where has this once a day for 6 weeks care package come from. 6 weeks is generally some sort of reablement service - can you contact them and explain the realists if the situation and see if they can provide more support.

If you’re looking at weighted blankets, you should be aware that the weight should be no more than 10% at the person’s body weight.

@Muchtoomuchtodo the 6 week package came after an assessment in hospital, it's not working for her, so we do need to ask for another assessment now she's back home - starting that ball rolling today.
She's had help from occupational health and has all of the mobility aids in place, and when she's feeling well, they do help her manage everything she needs to do in the house.