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Carers

Caring for elderly relatives? Supercarers can help

Original poster

We've become carers, and I don't know how we're going to cope

172 replies

Gazelda · 12/10/2021 14:26

MIL has been very ill. Has been in hospital for about 2 months but recently discharged.
In our opinion, she's not safe to live alone. But she is insisting she wants to be at home. She has capacity so SW are complying with her wishes.
She's immobile and doubly incontinent.
She has the highest level of carers from social services, but still falling out of bed, not eating/drinking etc
Me and DH both work FT. Have a school aged child. Live 40 mins from MIL and don't have downstairs loo so she can't move in with us.
We're 1 week in and she's had falls, 2 ambulances, we've each had to rush out of work to go to her. DH is in tears every night feeling he's letting her down but also trying to keep his job.
How the hell do we cope?

OP posts:
Lollypop701 · 12/10/2021 16:23

Start looking at care homes. We got mil in for a couple of weeks on rehabilitation then a week in a care home. It was lovely, and expensive, but mil liked it. We still saw her frequently and took her out for lunch. Sometimes you have to take control. Your main problem is dh… he needs to understand that she could fall, not reach panic Button and die on the floor overnight.. because it nearly happened to us. My heart felt sympathy op

NailsNeedDoing · 12/10/2021 16:23

If she’s had a week that sounds as awful as that, she may be beginning to realise that she can’t cope at home as she would have liked to. I have a huge amount of sympathy for your MIL, but it sounds like she’s being unfairly stubborn.

saraclara · 12/10/2021 16:25

[quote ClawedButler]I would heartily recommend that you call Age UK - they are incredibly helpful with this sort of thing, and can help you navigate social services and all other relevant agencies while also keeping hold of your sanity!

www.ageuk.org.uk/information-advice/[/quote]
Seconded. I had reason to call them a few months ago, and I was bowled over by just how helpful and knowledgeable they were. All the legal stuff, all the benefit stuff - they were absolutely on it. I can't praise the two people I spoke to highly enough.

tsmainsqueeze · 12/10/2021 16:25

@Gazelda

Unfortunately, DH keeps caving into pressure from SW. She has capacity and has said she wants to go home. So here we are. Trapped.
This is the problem sadly , as long as your husband does this sw / ss will take advantage of the situation. When she is next admitted to hospital if you can get your husband to agree then refuse to have her home , insist on meetings with social services and give them a crystal clear description of how your mil is living and how you cannot give what she needs due to your own family / work commitments. Don't protect your mil dignity by not telling them the reality ,someone doubly incontinent and refusing food is a situation that needs priority. Speaking from experience , if you give an inch social services will take a mile , they are so overstretched in all ways it is a great advantage to them when they can tick a box saying the person is being cared for by family, one less on the list. The relentless worry and guilt , hard work and everything else a family goes through when dealing with this often aren't taken into account .
olidora63 · 12/10/2021 16:28

If she has MC and has made the decision to be at home then she has MC enough to sort out her personal care,eating and drinking etc .
Unfortunately you and husband need to be less available when she has a problem…tough love !

BlueMongoose · 12/10/2021 16:29

This is looming for us, and we have been through it before. There is no good answer- if there is, I'd love to know it.

If she has 'capacity' to make er own decisions, she can't be bodily forced into a home, even if her chosen alternative is driving other people into an early grave.

As for SS, it can take weeks here of calling to even get them to answer the phone here, though they do try to help when you can get through to them. And in another county where we had a relative before, they plainly said to us that though they had a duty to provide people to help with care, they had no people to provide, so we'd have to deal with it ourselves. They made one visit a year, basically to say help was needed but we could whistle for it.
I feel for you, and I hope your MIL becomes more reasonable. Might she be willing to try respite care for a week if you could find her somewhere really nice? I have known of instances where the person liked it so much they wanted to stay permanently, problem solved.

Dogatetheleftovers · 12/10/2021 16:31

Please ask for an urgent NHS Continuing Healthcare Assessment. Have a look on the Care To Be Different website for further advice. But your MIL can stay in her own home if that’s her choice and receive the care she needs to meet her health requirements if she satisfies certain criteria. If she is falling a lot, doubly incontinent then those issues should certainly go a long way to her meeting the criteria. It’s horrible, I’m so sorry you’re all in this situation.

DameMaureen · 12/10/2021 16:31

Sadly when you get people like this who are stubborn about their life options it often ends badly with falls , broken hips , sepsis or pneumonia and a shorter life than if they had gone into care .

NewlyGranny · 12/10/2021 16:36

Whatever your DH does, OP, you need to stay sane and stable in your routine and never be the one dropping everything and running to her aid.

If you share that with DH, the whole disintegration of the situation will last twice as long and break both of you instead of just him. He can choose to do it: you can choose not to.

Time for self and family preservation.

PineappleWilson · 12/10/2021 16:37

There is still an episode of Eat Well for Less on BBC iPlayer where a couple got out of the habit of cooking for themselves as they had to care for one of their mothers. Including the night where they were called out 18 times in one night, and still had to get up next morning to go to work.

It is awful, but so is cleaning up the blood when they've hit their head on the sink in the bathroom and it's smeared down the wall. and as it gets colder, how long would she be stuck on the floor if she fell out of bed overnight and was just lying on the floor with no blankets?

You and your husband can't do the prop-up caring. It's not fair to your DC to have a bag packed by the door in case you all have to dash off to see MIL at short notice. Talk to your MIL about practicalities, about how she'll manage in the cold or when you go away for half term. But it may take a significant incident for her to get her to see that she can't manage.

PermanentTemporary · 12/10/2021 16:39

A shorter life may not matter to the MIL. The question is how much of it she wants to spend in pain, in fear, in an ambulance and in hospital.

Can you have the conversation with her again? I think the respite or convalescent stay would be a good start.

mumwon · 12/10/2021 16:39

can you see if there is a local carers support charity - they have networks & links to other organisations & they will be able to give advice to you both

Disfordarkchocolate · 12/10/2021 16:43

You're not trapped, your poor husband needs to learn how to deal with the social worker. They reality is they will act like you can be a full-time carer unless you are totally clear you will not be available.

FluffyWhiteBird · 12/10/2021 16:43

What's behind the not eating and drinking? Is it depression? Is it because she needs help to do these things and doesn't have that help? Is it because she's incontinent, has nobody on hand to change her and what goes in must come out?

wooliewoo · 12/10/2021 16:45

I feel your pain OP. Been in this situation.

Unfortunately OP as others have pointed out you and DH will really need to pull back. She has made a choice which is beyond her capabilities. She may WANT to be able to live at home and look after herself but the reality is she CANT.

Soc services can't "sort this out" as she has capacity therefore this will limp on until the situation breaks down (which may actually be quite soon).

If you are unavailable then if there's a crisis the Care staff will have the phone GP or ambulance. She will probably have several hospital attendances/admissions and then they will likely convince her that's it enough is enough.

It's really hard but I would advise you to proactively be looking for a nice nursing home for her and getting her name down on some waiting lists so you're not starting from scratch when the crunch time comes.

Good luckThanks

Bounce55 · 12/10/2021 16:45

What she wants and what she needs are totally two different things
If she is quite willing to go into a Care Home then make it clear to SS and get the ball rolling
It'll only go so far with Ambulances being called etc and then they'll do a Risk Assesment, but the quicker you start pushing for action to be taken the quicker they can place her etc

Beautiful3 · 12/10/2021 16:51

She needs to go into a home. She will deteriorate further, you and the carers cannot meet her needs.

RainingYetAgain · 12/10/2021 16:51

I remember this so well. DF had capacity ( supposedly) and insisted he was going back to his sheltered accomodation. Amongst other things he claimed I visited "most days" . Yeah right , it was 3.5hours each way to be fitted round dropping off/collecting from the school bus.
He was in a rehab care home and had fallen there and was full time in a wheel chair "for his safety". Social Worker was adamant he was fine as I was visiting frequently, even after I gave her my postcode and told her to use it on a route planner. I told her that I gave him a week at home befoe he needed readmission to hospital, she told me I was being negative and unhelpful.
I WAS WRONG- I admit it. He was readmitted after 4 days.
He still complained he was well enough to go home, after 2 assessments showed he needed nursing home care rather than residential. I know it was hard for him, but he needed to be safe.

ColleysMill · 12/10/2021 16:52

Sorry can't seem to quote but I think it's quite telling that the current care provider are saying they can't meet her needs and ss are looking for another provider.

This suggests to me that the current package isn't enough and ss may have to rethink the whole package - i think I'd be bracing myself for other providers to also say the same.

I have known care providers not bid for packages recently if they don't think they can provide the care (or make any money which is me being cynical!!!) which has never happened before

Good luck OP

SecretDoor · 12/10/2021 16:54

What is her prognosis? If she is dying then you both might feel able to support her short term. If this a chronic situation it's going to be more difficult. Is it likely her mobility and incontinence will improve fir example?

What is her understanding about her predicament. Is she realistic?

GatoradeMeBitch · 12/10/2021 16:54

I know this is callous to say, and even harder for you to do, but perhaps the two of you need to stop rushing from work to go and help her. It's just enabling her to keep going in this way.

ChorizoJacketPotato · 12/10/2021 16:55

I’m so sorry you’re going through this.

Unfortunately what she wants and what she needs are two different things.

Soontobe60 · 12/10/2021 17:00

Actually, if she is insisting that she is fine t home, despite the challenges she is facing, then she is demonstrating that she does NOT have capacity. My MIL was in exactly the same position. She insisted that she would be fine at home. SS and OT both insisted that she wasn’t safe (she lost all strength in her legs) and so she went to a rehab unit from hospital following her 5th fall. We made it very clear that we could not keep her safe, and your dH needs to understand that unless he’s with her, he can’t keep her safe either.

SchoolNightWine · 12/10/2021 17:01

We were in this situation with my MIL, and as she'd cared for her own mum at home, she expected the same of us and for us to move in with her.
I had to be blunt and insistent with doctors, SS, carers and my MIL that this absolutely could not happen, and we were only in a position to visit as normal, do shopping and housework and nothing else. It was the most stressful situation I've ever been in and I felt like the most horrible person around, but knew I had to be the one saying it all as my DH wouldn't have been as effective at getting the point across.
Thanksfor you OP as I know what an awful situation this is to be in.

Happyorchidlady · 12/10/2021 17:01

Presuming she is carers four times a day, I would be challenging it that this is the maximum care they can provide at home. This is legally not the case and there are challenges to this. There is no reason that additional care calls or live in care cannot be provided. The local authority have to look at financial viability as well as a person wishes but this is very different to a flat no. Seek some legal advice with your MIL if you feel that SS is not providing sufficient care at home to meet her needs.