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

[Gazelda]

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?

This spring I did a formal adult safeguarding referral online for my MiL - with the full knowledge and support of my DH and his DSIS. We'd tried liasing with social services but nothing appropriate.

They had to follow up on a formal referral. MiL has dementia but, actually, it was the double incontinence and inability to prepare herself a meal or remember to eat that forced them to act.

it's been incredibly stressful but, after weeks in hosital (on a care of the elderly ward) and three months in a temporary care home, she has just moved to our choice of home near to us - she was 2 hours drive away.

I can't stress enough how tough and proactive we had to be. It drove my DH to breaking point and I was genuinely really worried about him. At every stage our mantra - to ourselves and social workers and clinicians - was what was in her best interests. Every move and every stage was whether it would be better or worse than the existing situation. We got there. But it was tough. Good luck

Have you had any contact with her GP or nurse practitioner at the surgery. Say she is a vulnerable person living alone and the care package isn't working. You cannot provide additional care because of distance and your other responsibilities. They will have some evidence that this is true because the ambulance calls etc should have been reported to the GP by the ambulance service or hospital. If you're lucky they may be able to visit or otherwise conatct her to put in a word on your behalf.
Totally agree about the helpfulness of AGE UK and that you need to be extremely clear about what you can and cannot do, guilty feelings notwithstanding

OP been there, got the t shirt x 4. You have to think of it like this - if you decided to max out umpteen credit cards and your overdraft and then quit your job it wouldn't be their responsibility to bail you out for your stupid decisions. Likewise with theirs. It's tough though. We went through a phase were we had a glass of wind as down as we got in from work so we could say sorry can't come, been drinking, you'll have to call an ambulance/someobe else/wait until tomorrow as appropriate because of the guilt trips. I don't recommend it as a course of action but it's how desperate we got.

Ultimately what MIL wants and needs for now at least are not the same thing.

You can not be the solution.

Raise concerns with everyone you speak to and most especially her SW.

MIL needs a step down bed from hospital until she can manage at home.

I was in a similar position with my mother and in the end I managed to push for assisted living very close to where I live. She lived in rented . Even now it is not ideal but much better. Sometimes you have to be very firm . If there are falls then the next one could result in an injury that will make things even worse .does she own her own home ?

OP, you have to take a step back yourself - tell DH you're exhausted next time you're required - this could go on if you jump every time you're required. He'll only manage so long on his own, and that's where you should come in and support him, possibly with emotional blackmail by MIL, and have to work out what's best for her in terms of her personal needs.

A nurse at the hospital turned around to my friend's DM and said you have a lovely DD, why don't you go and live with her, in front of DD's face (no, being the due to fact she and DH worked FT and had no room) - they didn't stand their ground and ended up fulltime nursing (unpaid) the last couple of months turning and cleaning DM on her (unfortunate) death bed as she wanted to be at home.

Unspeakably tough, and all hinging on the fact she wants to stay at home. We had this with my mum a few months ago. Adamant she wanted to stay in sheltered accomm, started having falls (has dementia), went off in ambulance to get checked out one day and after a lot of toing and froing between hospitals never came home - went straight to care home. Since then she has never disputed for a second that's where she should be. This actually isn't that helpful because your mum has a different mindset at the moment. But the care home does kind of solve everything, expensive as it is. I went from nightmare worries to zero worries overnight. Good luck. Something will happen to resolve it soon as the situation has too much momentum for it to stay static.

@heldinadream 100% agree with you! You put her in the home and manage her situation but don't do the caring . I won't waste my best years caring ! It's just too much ! Take care of yourself and make sure she is somewhere nice amd safe near you . If it means all her assets go then so be it ! Good luck

''A nurse at the hospital turned around to my friend's DM and said you have a lovely DD, why don't you go and live with her, in front of DD's face''

Oh god that's bad.
My mother lives with us ( ... yeah. we don't get on too well) and has been in and out of hospital a few times over the last couple of years.

Last time she was in, the occupational therapist was so keen to get her out asap that she ambushed me during a routine visit and totally rail roaded and guilt tripped me, in front of mum. ''YOU can do this and YOU can do that for your mum - can't YOU!?'' ect. Looking fiercely at mum and mum going ''oh yes, i've told them you'll do all that''

I can't lift her on and off the bloody loo, no! But when you're caught off guard by health professionals like this it's really hard.

Literally one visit she's been in hospital bed for 6 weeks and they talk to you about moving towards a plan to start getting her moving around the ward gradually, and coming off her meds, and the next visit suddenly they're bundling her into your car with you with 2 commodes, a packet of incontinent pads, a walking frame and a wave goodbye!

rant over. sorry.

Double incontinence was the issues that punted my dad into a home

It can’t be managed safely or hygienically without support on hand

If skin breaks down, it becomes serious fairly quickly, so you can’t leave somebody like that for hours.

I can’t believe she’s at home. My dad has capacity and also wanted to be at home and they basically told him to get real.

You need to push back on the SW

Good luck, I know how stressful and upsetting it is c

You're only trapped if you allow yourself to be.
1. Tell SW yourself that neither of you is carer, MIL is probably saying you are.
2. Key safe fitted by door, either MIL or SS pays, so tell SW it's needed. Give code to all necessary people. Get extra key cut to put in it.
*3. Fall alarm, get one if she doesn't already have one. MIL or SS pays.
4. Set up call alarm to call a service, who then call ambulance, who let themselves in with key from key safe. Nobody calls you to deal with it, you don't leave work to help. Hospital calls you as NOK and you visit when other commitments allow. You tell hospital that you're not carers and can offer nothing other than weekend visit twice a month for cuppa and chat (or whatever your usual fully-healthy-coping-alone arrangements with MIL are).
5. Hospital transport or taxi takes MIL home after stay at hospital. MIL/SS/hospital arranges each time. I'm unsure who pays or originally sets up hospital transport, but it isn't you.
6. When ambulance service get pissed off with this and hospitals flag it to SW, eventually she is put in a home as deemed unable to keep herself safe.
7. You find out SW name, you attend care plan meetings making them rearrange if necessary so you can attend, you reiterate that you're not carers.
8. If possible DH gets POA for (in this case) health, which means it's not MIL decision to go home on discharge from hospital it's DH decision. So he can kick up a stink if that's planned and he feels it's unsuitable. But she has to agree to give him POA in the first place.

All but 8 is very good advice. Unfortunately though, having POA while his mum has capacity, will be no help. She still gets to decide and the POA can only be used with her permission. He can't override her unless the POA is converted because she has lost capacity. I have POA for my mum, but as she still has capacity I can't override her wishes. I can only act for her in her absence or if she's unconscious.

@Unsure33

I was in a similar position with my mother and in the end I managed to push for assisted living very close to where I live. She lived in rented . Even now it is not ideal but much better. Sometimes you have to be very firm . If there are falls then the next one could result in an injury that will make things even worse .does she own her own home ?

And this too, with bells On

My dad almost died because of a fall and the fall itself want even a serious one.

Basically your best chance is that she ends up in hospital and the discharge team decides that she needs 24 hour care in the short term, and arranges for her to have rehab/respite in a care home for up to four weeks. This is FOC and in situations like your MILs turns in to her remaining there. That's what happened with my MIL.

Having capacity doesn't trump basic safety, and she is not safe to be in her home alone. That is extremely clear. SW needs to assess her at home, if she is doubly incontinent and falling constantly, she cannot stay at home alone. SW is absolutely painting over this and fobbing you off.

If she has capacity then nobody can forcibly admit her to a care home, not HCP, not social services. She wants to stay at home, I think your husband has to persuade her that it’s not an option. What is the reason she’s falling? Is she usually a reasonable person? Is she expecting you to do a lot of care/ personal care for her?

@lynntheyresexpeople

Having capacity doesn't trump basic safety, and she is not safe to be in her home alone. That is extremely clear. SW needs to assess her at home, if she is doubly incontinent and falling constantly, she cannot stay at home alone. SW is absolutely painting over this and fobbing you off.

You can’t forcibly admit someone to an institution and keep them there in this country apart from if they are on a mental health section or they’re judged to lack capacity to make the decision.

My DGM ended up in hospital then a dementia unit for months - the situation was very similar (minus the continence issues).

She insisted she could manage at home with carers going in, she had a fall and was on the floor overnight. She was lucky to have survived.

Despite her saying she could manage, she clearly couldn't. She's now in a home and she's really well looked after.

If your DMIL has savings/property, then you need to have a straight conversation with her and start to look for a home near to you.

It's hard but it's the best option, she will hurt herself, there will be more ambulances and it could end really badly.

If she can pay for care, it's best to get the ball rolling now and enquire at a few places locally with decent CQC ratings. Even if it takes her a little while to get on board.

@lynntheyresexpeople Capacity trumps absolutely everything short of a very limited number of circumstances where the courts will overrule someone with capacity but those cases are few and far between.

1. You cannot lose your livelihoods, as you are responsible for yourselves and a child.
2. Your mother-in-law may have the mental capacity to make decisions but does not have the physical capacity to care for herself and so if she is unable to provide/arrange caretakers, then she isn't really carrying that mental weight. Saying "I don't want to" isn't the same as "I'm calling up the service to make sure I have full coverage."
3. She is a danger to herself and to others if she, say, lives in housing that is attached to other houses and tries to make a cup of tea and sets things on fire, which is highly possible in her state.
4. If you can't sleep/do your job/care for your child, you are in danger of losing your job/losing your health/losing your child. You're already near full capacity.

Op as others have said, you and your husband need to take a step back. It might be that your MIL only understands the reality of her situation when this happens.

My MIL has been bedbound at home for over a year now. She refuses to consider selling her house to pay for a nursing home. Her main company is carers visiting 4 times a day, with additional visits from family 2 or 3 times a week. It is in my opinion a sad and miserable existence, but she still has capacity to make her own decisions and this is what she wants.

Just say no. Social Services are only too keen to foist responsibility onto the relatives. It's easier and much cheaper. I know only too well. My dear FIL lived with us until his diabetes forced him to have a leg amputated and meant he would have to use a wheelchair. SS were very keen for him to come home until we pointed out that our house could not accommodate a wheelchair and he would be restricted to one room.

@endofthelinefinally

Capacity IMO means being able to make a logical and safe decision, not just being able to state a want. But unfortunately this definition is stretched to the limit until there is real danger.

capacity doesn't mean "logical and safe decision" your opinion doesn't come into it there is a legal definition and that includes the right to make stupid, illogical or dangerous decisions.

I was in exactly the same situation a year ago, make sure social service are involved and know you are unable to continue with any care. A home assessment should have revealed that she needs constant care. Unfortunately the more you do the more they will let you do. As far a MIL goes tell her the truth that no one wants to go into care but she isn’t coping at home.

oh PS if its your husband who is caving, ask HIM how he is going to deal with it because you cannot

@julieca

I can understand elderly people wanting to remain at home. If you don't have the funds you will likely be in a home where a lot of residents have some dementia. It's not fun. And it is because most older people have visited people in residential homes that they do everything to avoid going into one. I think younger people often have unrealistic idealised view of the realities. But there comes a point where people have no choice.

In all the care homes that we visited, prior to my dad moving into (a fantastic) one, residents with Dementia lived on a different floor.