88yr old DM with Dememtia wanting to leave carehome to go home as being pushed by my Dad - what can I do?

[Secondtonaan]

DM is 88, has vascular dementia, I'd say middle stage. V bad osteoporosis and mobility, incontinent and very confused. My Dad was looking after her at home for 3 years with one carer visit a day but it was going terribly, she had a lot of falls and A&E dashes... his health was declining too as getting no sleep and struggled with household tasks he'd never had to do before. He clearly couldn't cope but refused any more help from carers or anything I set up - day care / lunch clubs / meals on wheels etc etc.

Start of 2025 she went into a lovely care home for respite care - although I thought this would be long term as it was clear she needed this level of care. She is very happy there, well looked after and thriving doiing the activities compared with being stuck in one room all day at home. My Dad had some health crisis and ended up in hospital for a few months so DM has stayed until now.

However my Dad is now home and "better" and is desperate to get DM home. He could not cope in any way and she is so much better off where she is. I'm terrified what would happen if she went home. It's all about what Dad wants - he is lonely and feels abandoned by DM and as she hasn't lived at home for a year is totally ignorant of her care needs and seemd to have totally forgotton the state they were both in when she lived at home.

My Dad is about to give notice to the home for DM to leave. She has been appointed a social worker but is telling her she wants to go home so the social worker is supporting this. DM has no idea what's involved or any concept of how to cope at home... I don't even think it's what she actually wants. My Dad goes into the care home 3 times a day and tells her she's coming home so this is what she's telling people. I'm at my wits end, trying to explain to social worker the disatster that would unfold but they are saying they have to support DMs choice.

I'm trying not to drip feed but also not make this too long! I have POA for both financial and health as does my Dad. DM had a DoLs assesment recently when they said she lacked capacity (the care home say she lacks capacity) but then it was reveiwed at the last minute and they changed their mind and didn't sign it so there is no DoLs in place which I cannot understand as she clearly has no idea what is going on.

What can I do to keep DM safe / in the home?

I feel like the first step is to agree this question of mental capacity for this particular question.

Do you think your dm has the mental capacity to decide where to live - eg does she have the capacity to decide to stay at the care home? Could she explain how much it costs, how it is being funded etc?

If not, I would phone the care home manager and the social worker and say so, followed up by emails summarising the calls. Ask to see the notes of any assessment of capacity that has been done. If you don’t think it’s good enough, or don’t understand it, ask for a further opinion on mental capacity for this question at this time from the GP.

To me, that’s crucial. If she doesn’t have capacity, ask to hold a best interests meeting with your mum, dad, you and the social worker, to make a decision on her living arrangements.

If she does end up going home with the label that it is a capacitous decision, I agree with you that it sounds disastrous. Don’t be afraid to call ambulances if she is at home and nobody is coping.

Thanks so much for taking the time to reply, this is excellent advice.

Such a difficult situation for you to be in.

Was you DM fed well and hydrated at home? Did she get her medication on time?

How is your DF? Does he have full capacity if he has forgotten what looking after your DM was like?

Generally the time for needing full time care is when they need support at night. Your DF can’t look after her all day of he’s had no sleep at night. Even looking after a person with Dementia every day is too much for one person, especially one of his age.

I think I would be contacting the SW and saying that you disagree that she has capacity and you will be asking for it to be assessed again.

I would also make it clear that you think this is safeguarding issue. That your DM simply won’t be safe in the care of your DF due to his age and how he didn’t cope when her needs were less and if anything happens to your DM when she’s at home you’ll be seeking legal advice.

I would also say that you will not be helping in any form. SS will be delighted if you take her home and just struggle on between you if it means that they no longer have to pay for the CH fees.

I had to do something similar when DFIL wanted DMIL back at home but one of the reasons she had gone in was that we had found out he wanted a double suicide, only of one of you hasn’t got capacity it’s not suicide is it?

So keep on at the SW, I called DMIL’s every day till we got what DMIL needed and make it very plain that you will be holding them accountable if and when the obvious crisis happens at home.

And yes, that is excellent from Permanent

Fab advice too - thank you so much. My Dad has totally forgotten what looking after her was like and is a very short tempered and abusive man who is the least suited to dementia care i can imagine. She sundowns and wanders at night (as much as she can on her frame!!) and he was dying from lack of sleep so it would be a disaster.

The social worker wants 4x visits a day but these are only 20 mins so what is he going to do for the other 22hours 40 mins in the day? He is very plausible and lies to the social workers, he has lots of medical appointments of his own and can't leave DM - he told them he had neighbours on hand for this when the reality is there is no one. The only ones they know are is very ill herself and other other are abroad a significant part of the year.

i think i’d write to social work and tell them everything in writing. including the famous phrase unsafe discharge slotted in somewhere. and maje sure they know you ahd the neighbours will not he helping at all and everything.

I would also write to the social worker, in the email about the mental capacity assessment and best interests meeting, what views if any DM has expressed to you about where she lives now; or going home? It’s well known that people with dementia find moving unsettling, especially if they are happy and settled where they are - how would unsettling her, be in her best interests?

As pp said capacity is judged for this particular decision, and is judged in 4 parts, so maybe use this as a framework for writing to social worker
‘a four-part functional test: understanding, retaining, weighing information, and communicating the decision, all at the time it's needed, with support provided to help the person decide’.

Seems like she might not be capable of understanding the support she needs, and retaining for example a memory of what her life was like before the care home, ‘. I found my mum’s care manager had a sketchy understanding of DOLs and was over cautious, much as she was lovely, caring and hardworking otherwise.

. I would also have email or conversation with care home manager/carers who know your mum to explain what’s happened before and why you would like their support if they feel able to give it in the assessment of her capacity for this. Not easy but it sounds like you are acting in your mum’s best interests so I’d keep stating that.

It doesn't sound like it was the care home that denied the DOLS? I assume it was a psychiatrist, or doctor, or social worker?

Either way, OP, as there is no DOLS and if your DF has a PoA as well as you, he can act on it.

Sadly, in these cases, you just have to wait for the inevitable crisis. Hopefully it would be your DF realising that he cannot, in fact, cope.

I’m so sorry you have this situation. We had almost identical with MIL - dementia, osteoporosis, double incontinent and immobile. And yes FIL originally wanted her to come home from hospital, and ss would have gone along with it - they even started delivering mobility aids. Luckily DH and SIL were eventually able to convince FIL that he couldn’t keep her safe at home. It was partially his inability to care for her that had landed her in hospital in the first place, but he was completely in denial. The clincher for him and as was asking: if MiL pooed herself at night, would she be lying in it until the morning? Because there was no way FIL could change her. But he was not short tempered or abuse, just delusional and guilty about ‘abandoning’ her. SS were the surprise to me - how willing they were to overlook the obvious in order to send her home.

Put all your concerns in writing, all of them. Make it very clear that you hold ss responsible for any injury or death resulting from their decision to put MIL in unsafe conditions.

Thank SO MUCH for replying and your advice, it means so.much.

I'm an only child so feel totally alone with this, the years I spent supporting them at home were horrible and I don't want to go back to that constant level of worry. I felt I was neglecting my DC and work and it was a nightmare.

I'm surprised at how passive the social worker is, she just goes along with whatever Dad says which is clearly a load of bollocks!!!

SS were the surprise to me - how willing they were to overlook the obvious in order to send her home.

I'm giving a wry laugh here. Having been involved with SS for two relations with dementia.

Sorry, OP, but as you have found, SS are a complete waste of time in a situation like this. And sometimes worse than a complete waste of time.

I'm surprised at how passive the social worker is, she just goes along with whatever Dad says which is clearly a load of bollocks!!!

Yup, that's what they do.

I am so sorry you are dealing with this. I have no advice but all I can say is I work as a carer and one of clients has VD. I see her at teatime for half an hour and then the same amount of time for bedtime and it is becoming harder to get it all done in the thirty minutes I'm given. I just work extra. Twenty minutes is rubbish.

I'm so sorry you're going through this OP. I agree you have to put all your concerns and the reality of the situation in writing not only to the social worker concerned but to her manager and any legal contact that was involved in the DoL. That you will hold them responsible for any harm that results from this. Who was it that didn't sign the DoL at the last minute?

We have been in a similar situation though it was our family member with Alzheimer's that wanted to go home alone (despite this having failed catastrophically on multiple previous occasions) and the opposition of multiple authorities, psychiatrists, social services etc. One fairly clueless social worker went along with it and ultimately we were forced to allow them to give it (another) try - it went very badly very quickly and they did return them to the care home. We had to be on it constantly pointing out what was happening - it is helpful also to be in contact with the carers and their managers as they will be able to provide accounts of what they've observed and experienced to ss. I hope it doesn't get to that point for you but just don't stop pushing if it does.

I'd give Age UK a ring. They're brilliant at talking through the process and what to expect.

Request the care home convene a best interest meeting involving yourself/father etc so concerns can be raised by all and discussed. also ask to see the Dols assessment and who reviewed it, removed the Dols and why. Ask the home put in for another assessment particularly as they feel she lacks capacity.
Who is currently funding the care as ultimately they will be the decision maker

If he is short tempered and abusive I would email the SW with examples and raise it as a Safeguarding concern.

Do you know why your F wants her home? Is it joint money that’s paying for her care? Could it be through loneliness or guilt or has he simply forgotten how hard it was before and how much support you were providing?

You definitely do need to out in your email that there is no kindly neighbour to cover for your D when he has medical appointments and you cannot be with your DM as you work.

Without a DOLS, OP's DM cannot be kept in the home if she wants to leave.

SWs won't care that she'll be left alone when OP's DF has occasional doctor's visits.

"Safeguarding" is a joke. That won't make the slightest bit of difference.

OP, you need to prepare for the fact that your DM will soon leave the care home. Gird yourself.

Sorry to sound bleak, but I've been through all this. Twice.

What does your dad do practically for your DM on his three visits a day? Does he help her moved from chair to table or bed to chair? Does he help feed her? Help her use the toilet or change her? If he really wants her home he should be demonstrating his ability to do these things between carer visits so social services can be sure she is safe.

if he isn’t doing these things then does he understand that they will be needed between carer visits? If you can get him to see (and demonstrate to social workers) that he cannot manage what getting her home would entail then he might stop pushing for her to come home and the social worker might realise that they cannot allow it.

and the social worker might realise that they cannot allow it.

There is no DOLS. OP's mother is not under a Section. It is not up to the SW to "allow" it or not. (Not that they would want to anyway, they're a waste of time IME.)

Agree that the SW is who you have to work on. Convince her that her life will be considerably harder if she enables this.

Be very clear and extremely firm. Make sure you put in writing that DM clearly does not have capacity.

She is very happy where she is.

Insist on a home visit to your parents's house and a full care package, making it clear that you can not guarantee that you will be able to cover any emergency, and that you will be calling an ambulance every time something goes wrong.

We had exactly the same scenario with my parents btw, there was a meeting between us, adult social care and the boss of the care company who had been providing in home care for several years. I cannot remember how it was phrased but they reported that home care was simply not possible and luckily me DF accepted this. He was extremely depressed for some months, but in the end it was an ideal outcome and he was fine with it.

Thankyou for this post - it's just what I need for Elderly Relative who wants to move care home. He imagines that in another place he will be able to walk, breathe easily, and sleep well, all sadly not coming back.

She says she is going home as my Dad keeps telling her this - I'm not sure she'd mention it otherwise. She has been home a few times for an hour here and there and always says she doesn't like it, house feels strange etc