Advice to resist pressure for discharge of MIL to my home

[Weaktea]

I’ll try to be brief. I’ve cared for Mil at my home for 5 years. Now severe advanced dementia and stage 4 cancer, incontinence she’s 92. A recent fall has left her with a broken foot and she’s on day 9 in hospital.
she is now completely delirious but they have said medically fit and need to have a discharge plan. Would I have at her my house? I’ve said no. They Mentioned hospital bed downstairs, hoists and visits from carers.
she used to have a little
mobility so I could just about shower her but they don’t think she’ll regain mobility.

i was at the end of my tether anyway, they have said they will refer to social services which I welcomed.

what can I expect or push for?

thanks!

Tell them you’re doing it in advance and say it’s for your own records so you don’t forget things.

Also:
The reality is, they will send MIL back to you and you will fight tooth and nail for 12 months to get anything at all

PP was correct. If you open up any dialogue whatsoever, they will pick up on each point and try to convince you of the ways they will help you cope with it. But it will likely either never appear, appear but be very much lacking vs what was agreed or there will be excuses as to why it can’t be delivered. You’ll also be lucky to ever see carers, or certainly not as and when expected/needed and for no more than the absolute minimum amount of time.

Speaking from experience DO NOT GIVE IN !!!!! all ss want is to tick a box / job done then move on to the next patient ,anyway how can they say she's fit for discharge when she's delirious ?
Start quoting duty of care at them , twice i have been in this situation with elderly infirm relatives who could not move back into their own homes and i would not have believed how manipulative and devious social services can be, they don't care how the needs of the person affects the life of the carer and their families as long as they can get them out of the overloaded system.
I also suggest you do not go alone to any case meetings , there are usually multiple people in attendance from different departments which may feel a little intimidating and add to the pressure.
Stand your ground , you know whats best for your mil and good luck.

Without sounding too OTT, it was horrific.

We wanted the absolute best for MIL but because she kept saying she wanted to either go home or stay with us, according to SS, her wishes overrode any practicality, and whilst she didn’t have full dementia, she clearly wasn’t able to make a rational decision.

Before she ended up in hospital, we tried paying for a live in carer for several months, but MIL would get up in the night and wake the carer because she couldn’t sleep, so the carer was permanently exhausted too, let alone having to change sheets several times a night! Even when the carer had a her 2 hour break in the afternoon, MIL would want her to take her to the toilet or entertain her.

Eventually, we won through sheer bloody mindedness and MIL ended up in a lovely care home where she had company, entertainment and the burden of care was spread amongst a team, not on one or two individuals.

Although it is distressing for ALL concerned you must keep saying NO. Try not feel any guilt ,you have done so much but you have to look after yourself. The other agencies will keep trying to convince you to accept her back to your home. and offer the world to support you but the are not the ones who would be dealing with the stress Even if a care package offered, (from experience) I know it will not be enough and can breakdown so you end up filling in the gaps.Do not do it. Speak to hospital social worker and or discharge planning team to make sure they know you are not prepared to have her be discharged to your home.

Don't ASK if you want to record, TELL them you are going to.

Someone I work with just stopped taking their calls. She said in writing that they were not able to have their relative home and would not discuss it further. Then they stopped answering the calls until the care home was found and the relative moved. Harsh but necessary.

Tell them no. I'd say I was completely incapable of any more care. And I'd repeat the phrase infinitly so that there was no space for tactical maneuvering on their end and no chink of doubt for them to exploit.

Just to add I and my brother attended a MDT meeting about my Dads discharge and we did record meeting ,did not ask, did not care about legality at the time. Care package was identified and put in place Dad came home and it all fell apart. within a week.We did manage to support him and care for him but only because my brother was great and I knew what I was doing. We managed for a few months then sadly Dad died

We had this, woke her up at 1am and had her walk around her hospital bed, then discharged and sent home in an ambulance. Turned up at 2am to her very confused husband. Nightmare, no carers in place as no one expecting her home. Unsurprisingly back in hospital 3 days later.

If your MIL has a set of keys to your place Id pick them up. I’ve heard of people being taken home and tucked into bed.

Very recent experience here and they do try to make sure all "lesser" care packages won't work before you get agreement for residential. But here you aren't willing to provide the accommodation so they won't have a choice

I just looked into the nhs funding and we didn't meet the requirements as it was more needing nurses to deal with unpredictable and severe illness. My experience didn't involve dementia though.

Sorry just read a few more messages on here so have a bit more to add:

1. I had to be very clear that there would be no accommodation provided - this broke my heart to say it

1. The ability of the caregiver to give care doesn't always swing it. I was told that an immobile and blind 98 year old could make do with carers four times a day and the keys in a key safe on the front door if no one was there.

The reality though it seems was that the council and the social worker had to show they had thought about it all properly, and the right decision was reached after a lot of panic at my end.

Op -from personal experience I agree with previous posters. You just cannot take care of her at home. It's impossible. I helped take care of my Dad at home who had terminal cancer, couldn't walk or stand, a catheter and other serious issues - it took 4 strong adults round the clock but we did it and we got not one shred of help.

We were all fit, between the ages of 25 and 60, and working from home and my dad had no dementia and was happy, cooperative and good humoured till the end. If he had had dementia on top of that, there is just no way we could have managed. It was still horrendous and my back has never recovered and neither has my husbands'.

When Dad was taken to hospital as he was dying and in terrible pain, the A&E consultant found bedsores on my Dad which we had somehow missed. We all so felt terrible about it. Even four of us working together and we still missed that. Please refuse and make it clear, in writing that she must not be returned to you in any circumstance whatsoever and let them sort it out. So sorry.

Keep saying no and mean it. It’s not workable with all her issues bless her. You will not cope and it’s harder to get her moved from your home. She needs proper care in a care home or hospice.

No, you need to say - sadly we are unable to care for her any longer. You dont have to justify your decision.

To be fair to the OTs, they will only be "pushing" because the discharge team will be telling them to as your MIL doesn't need to be in hospital.

The problem potentially comes down to the legal issues....does she actually own her own place, has she transferred any funds to you to live in your home. If she has any legal claim to live in the home - your home - then she has a legal right to return. If it is "just" your home and she has been staying there for a while, she doesn't. In which case you stick to your guns and say she can't come back and therefore she will be made homeless. That doesn't mean she will be placed in a home, it could mean the council have to find a place for her to live and arrange all the carers and equipment to go to that address. Even if she has full capacity (which she won't from what you've said) and wanted to go to a care home and had the full proceeds of her previous home in the bank, it still wouldn't necessarily mean that a care home could accept her a self-funding patient as when her money run out they would be stuck. If coming to you is not an option...stick to that with the hospital.

That's unfair. It's right that doctors should be wanting to discharge patients as soon as they can't do anything more for the patient - hospital is not a good place to try to recuperate - and it's not their fault that social care is on its knees. You're aiming at the wrong target.

40"000 care workers left the profession due to the Covid vaccine MANDATE. You reap what you sow

Remember its possible to be against vaccine MANDATES without being against vaccines.

Just keep saying no, you cannot manage her extremely significant needs in your home. They’re trying to take the option that’s easiest for them, not best for MIL or you. Do not cave in. She needs a nursing home due to her level of need.

Stand your ground, and say no, they will sort it, eventually!

Sorry for delay in reply.. yes delirium is a medical problem although very common. She is not fit for discharge if she has an active delirium.

This. She has the right to receive adequate care at a nursing home but by sending her back home they are hoping to save £1000s a month. She will be better cared for where she has staff around 24/7 don’t feel bad about saying no, that’s what she and we all pay taxes all our working lives! It is their turn to be there for her.

I've been through something similar.
They are trying to save money - & really can't be blamed for trying.

Stay strong, keep saying NO.

Block their calls & e-mails if you can, or don't answer them.

This isn't accurate. Delirium often improves once people are out of the hospital environment. This will be one of the reasons they want her to be discharged quickly to prevent her from deteriorating further. People can get delirium at home and you certainly wouldn't be rushing them to hospital with it.

We have had this. They talked a lot about a care plan, support and adaptations. Then just dropped her home on her own when nobody was there, no support plan, no adaptations not a care in the world. She was found by a carer next morning on the floor, bruised after yet another fall and totally confused. She was put in respite care in a nursing home, which thankfully said there was no way she would cope on her own with care visits and said they would make seem the situation worse so she could get the residential care she actually needed.

My exP was dying of guilt at not being able to care for her grandma anymore (and he, as you did a LOT of the care, like going every morning to change the bed, put a wash and clean her after the regular overnight incontinence problem as the carers couldn’t do much in the few minutes they visited). If it helps to ease the guilt grandma , who had advanced Alzheimer’s really seemed much better at having company around her rather than sitting in front of a television she could no longer hear for years on end.