Parent refusing care home - can anyone help

[Twizz]

Really tricky situation and wonder if anyone here works in elderly social care or has experience in this area.

Basically my father cares for his wife 24/7. She is aged late 80's and he is early 80's. They live 4 hours from me and there is no other family to help.

She has dementia, with lucid moments but also lots of non lucid moments. She cannot walk or stand unaided, but forgets she can't so lots of falls and ambulances needed. She is also doubly incontinent, and has some other health issues including seizures. She cannot be left for 5 minutes as she will get out of chair or bed and fall.

My father, whilst generally well, has heart issues, and joint/arthritus pain issues so struggles physically. He is doing 24/7 care as she is up all night and often falls out of bed and he has to change her.

Basically he needs a break. I think it is a safeguarding issue for both of them as he is exhausted mentally and physically. He is waiting for a mental capacity test for her through social services but we are not sure how that works. Sometimes she is ok(ish) but lots of time not.

We have lined up a care home close to him for some short term respite for her (he will pay) but having initially agreed, she has now decided she won't go. She told him she is fine to take care of herself and he can go in the home.

We reached this point a couple of month ago and when social services visited they said it is her choice but to tell them when he needed help. He threatened to walk out to see me as he is so desperate for a break and they said please don't do this. But how can you force an elderly person to do the care. They have been married 20 years and it's so sad but he needs a break.

A carer morning and evening is not the answer and he has still has the other 23 hours of care.

I am going to ring their social services team tomorrow and seek some guidance.

Anyone had to tackle this issue. Any guidance really appreciated.

My mum hired a live-in carer for a few days respite care after a bad experience in a home. would that be an option?

Social services wont want him to walk out as he is doing all the care. You can report this to his adult safeguarding team, his g.p and as she is already known to social services they need to help. Does she have a district nurse, dementia nurse or gp who can do the capacity assessment. It doesnt have to be social services. I am surprised they dont have any care at home at the moment, especially as she has been in hospital, has many falls, has dementia and is incontinent whose choice was that. Has she ever had a care needs assessment which she obviously needs and he could do with a carers assessment. Do they have any equipment or adaptations at home, a falls alarm, careline, keysafe.

IME you have to be really factual and keep stating the same points. Write down bullet points of what you have said here to help. Ie: there is nobody to care for her. Your dad is unable to manage. Have a list and stick to it. Insist that help be provided to meet her needs. Ask for a report back as there are safeguarding issues and take the name of the person responsible for checking. Good luck. It's really sad when you have to do this, but it's important that you help your dad to sort this as it's obviously not sustainable as it stands. He will need you to be strong.

He cannot be forced into caring for her at this level, you could ring the duty social worker and say he just cannot cope any more and that she is at risk of serious injury, they may suggest emergency placement as a safeguarding issue.

This is care crisis if your DF went into hospital say then DM would have to go into care. It sounds like she would need a secure dementia care unit and a high input of care.
If your DF can pay privately you could just book her into an appropriate care home if you have one that has a secure dementia unit nearby. Make sure they have all the information and do an assessment.
It sounds cruel but she would just have to be taken and cajoled into going in where they may be able to distract whilst you leave. If your DF was not there this is what would happen.
Could your DF go out and you take your DM and explain he has gone into hospital for a minor op or something to get her to go.
The only other way is to call SS and say your DF is unable to care and as you say this is a safeguarding issue as she will be left without care. You could state you are bringing him to you to rest and they need to arrange urgent respite care from X date. If no one forced their hand they will leave it.
We had a lady brought into one of our care homes by her daughters and she did not want to be there but did settle after a few days.
So for me it’s either manage it yourselves and arrange some slight lie to move it along or demand SS get involved but be adamant his care for her ends at a given point.

The quickest way to do it is to tell social services there is a carer breakdown. Your dad cannot cope and will be living with you and therefore there is no one to look after his wife. They won’t move quickly if someone is there doing everything; the system is at breaking point so they have to prioritise.

By the way this again seems underhand but once she is in a care setting your DF can refuse her return as it is unsafe for him to be caring for her. The SS funding and assessments gears will then start grinding as she is in the system and they will have to arrange a suitable long term outcome.

Thanks for your response. I had briefly considered this but worried that it would be really intrusive in the home for my father and not really a break as he would just help and still wake in the night.

As she is not an easy person to deal with, and worse with the dementia. I can't imagine my father leaving her with one carer in the home. They would need a lot of patience.

Glad it worked for your mum. Perhaps I will check QCC and see if there is anything near him with good reviews as a plan Z.

Feels awful, but similar situation when my grandfather was too unwell (dementia) to live independently. Family lied to him that he was visiting a friend who lived at the care home for a few days to get him there, but once he was there he was fine.

Still remember it clearly, no drama, just took him there in a taxi, stayed a few hours then left. Visited many times and he never got upset or asked to go home. To be fair he probably should have been there much earlier. DM said DA (NOK) didn't want him to go in a home and by the time she finally agreed it was difficult to find one that would take him as his dementia was fairly advanced.

Thank you everyone - I replied to pinkcattydude and then saw all the replies.

It is so difficult and my father so proud but yes - I am thinking of telling social services I am coming to get him so he is not available. They have funds and a care home waiting but someone needs to persuade her to go in.

GP has not been good. We are going to call them also on his behalf tomorrow to emphasise his health. He tried to get their help when she laid on the floor after a fall and wouldn't let him call the falls team. GP just said they have to treat that as a domestic.

They have seen social services recently. Occupational health gave them a hospital bed and walker. They are waiting for a capacity test but I'm not sure who he has asked.

She had a massive seizure last week and spent one night in hospital. They discharged her with a catheter for 2 weeks. He had to call and ask what to do. They have now sent a nurse to help with this.

I agree social care is desperate. In this case we have a short term solution.

If we tell the care home she doesn't want to come do you think they will work with us to persuade her?

Is it the district nurse helping with the catheter? Talk to them about it, they know what help is available.

The care home cannot help to persuade your mother. There's a fine line between that and coercion, and they cannot be seen to play a part in that.

I'd echo the suggestion of more intensive home help, especially initially to give your dad a break. Alternatively, could they both stay in the home for respite, with things to be reviewed at the end of an agreed period? I know couples that have done this, separate rooms/ unit, but in the same home so they can still have time together.

Ah mum managed to stay out of it as she went on holiday during the respite cover, although she got much better at leaving the farmers to it over time

This is an almost identical situation to what happened with my parents. My Dad was doing all the care and was very proud about not asking for help. My Mum had worsening dementia, refused personal hygiene and could be quite aggressive. We were trying to arrange a care home but my Mum was refusing. Then my Dad became ill, was hospitalised and we were left in a very difficult situation.

After huge amounts of difficulty, we were only able to get my Mum to go to the care home by telling her she was going there on holiday. This seems very underhand but there was simply no other way, as she couldn't stay safely alone at home at all and was unable to make a decision for herself. The Council will carry out a DOLS assessment (Deprivation of Liberty) to decide if she is capable of making a suitable decision herself about where to live and if not whether the home is the right place.

I really recommend Admiral Nurses for advice and help. www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/

This is really common.

Does anyone have a lasting power of attorney for her?

If not then the local authority is responsible for making a best interests decision for her. They can only make this considering the realistic/viable options available for her. Things staying as they are is not a viable option for her at the moment.

If she will not go with some coercion/encouragement from family then in circumstances where there is no other option the local authority can make an emergency application to the court of protection to use force to convey them to a care home but that is extreme measures that I have only used once in 15 years.

What happens most of the time is family get them in the car, drop them off at the care home and scarper (in the nicest possible way) and let the dust settle for a few days. The care home applies for deprivation of liberty order and deal with the fall out. Usually people settle quite quickly though.

The Mental Capacity Assessment will likely be around her going to respite. If she is refusing to go, and is found to have capacity, there is nothing that can be done. If she lacks capacity, a decision can be made in her best interest to go into respite.

In the end your mum's choice may be taken away from her by a deprivation of liberty order.
For those who don't have the mental capacity to make decisions
My mum has advanced vascular dementia and this was something that was included in paperwork for her admission to a care home.
She was OK with going into the home as she understood she was no longer safe living independently.

Thank you everyone. Just spoken to my father and we are going to continue with the care home admissions process, whilst trying to persuade her this week. The home is in walking distance from their home, and my father now can't drive so that really would be the best result.

At the same time we will call Social services, to see if they can send someone to help persuade her given the safeguarding issues, and if necessary, if they won't help, give them a date that we will be collecting my father for his respite break with us. We don't want to give them an ultimatum but can't see another way.

We may have to drive up to help persuade her to go in, and then go back to collect for a break with us.He will want to ensure she is settled first. So hard when we are so far away.

It so tough. Thanks for all the replies.

She is in the system if o.t. supplied a bed and a walker and the nurses were looking after her catheter. At some stage the o.t may have done a home visit to get the bed installed and to assess her mobility and refer her to the falls team. If she has capacity then she has the right to reduse care but he has the right to refuse to provide care as well, if she does agree to moving to a carehome then you will need to think about how you will get her there and the manager may want to assess her first at home to make sure they can meet her needs and will advise you about covid testing. Is there a poa in place for her.

It's incredibly hard OP. The bottom line is that your father has to say to everyone - to his wife, to social services, to the hospital, to the GP and to you - that ha cannot safely care for her at home. He has to repeat this over and over and not be swayed.

DH and SIL had to coach FIL to repeat this as he was terrible for agreeing to whatever the social worker, OT, physio, etc seemed to be saying about MIL (who was by this point immobile, doubly incontinent and suffering from dementia, Parkinsons and severe osteoporosis) possibly coming back home with a care package and him filling in around the care visits. It was outrageous that they even suggested it, but the moment he looked like he was wavering they would jump on it. He found it very hard to say out loud, but he had to - consistently.

The other pps have mentioned Power of Attorney: if your fathers wife has any capacity at this stage it would be good to get PoA sorted out asap.

Just wanted to say do go and look at the Elderly Parents forum (it's under Other Stuff).

It is a life saver and brilliant for both moral support and practical advice.

I hope you get sorted soon.

The Alzheimer's Society/Dementia U.K./ Age U.K. websites and helplines are also fantastically useful.

Legally, the care home staff cannot try and persuade, but the manager may agree to do some home visits, which is difficult with Covid situation, to establish a relationship with her.
Or, they may visit and suggest that she go have a look at the home and she may then stay? May work better than you and your DF taking her to the home.

Re capacity, if she is found to lack capacity and a Best Interest decision for respite is made, if she continually refuses to go then no one can force her. Only if, after a Mental Health Act assessment she is deemed to be placing herself at risk of harm can she be forcibly removed from the house.

The care home manager needs to apply for a Deprivation of Liberty Safeguarding, this gives legal power to return people to a residential setting if they manage to leave the building.

Good luck OP, I know it’s not an easy situation.

Re capacity, if she is found to lack capacity and a Best Interest decision for respite is made, if she continually refuses to go then no one can force her. Only if, after a Mental Health Act assessment she is deemed to be placing herself at risk of harm can she be forcibly removed from the house

That is not strictly true. The mental health act would only really be appropriate to use if it was felt that the person potentially required a mental health act assessment. The mental health act wouldn't be the appropriate piece of law to move someone from their own home to a care home if the only issue is that the lack insight into their care needs due to e.g. dementia and are saying they don't want to go.

Its more appropriate to use the Mental Capacity Act in conjunction with the Care Act, and it would be an application to the Court of Protection to agree that the person could be deprived of their liberty in a care home. The court of protection could also consider agreeing that the person can be conveyed against their will although its very very rare that any such agreement would include physical force/ restraint unless it was completely unavoidable.

I’m not suggesting that there is any evidence of the need for a Mental Health Act assessment in this case.

Generally we can support the person to access the respite without too much persuasion or coercion so remaining within the law and guidelines of the Mental Capacity act.

Thank you everyone for your comments. A quick update.

Following our call to Social Services yesterday, they allocated a case worker who visited this afternoon. They did an assessment and agreed she does not have mental capacity. It sounded like the SW also joined in discussions regarding care home options and gave some strategies to help my DF persuade her.

We are carrying on the care home admissions process whilst arranging for an old good friend of hers to come and talk to her and then take her for a visit as another option to try and persuade her. The thought is someone independent of my DF may help. SS did discuss deprivation of liberty(?) but we are not sure about this at the moment.

We may still have issues as she is not yet in the home but my DF sounded so relieved, like a weight lifted. I think he really needed someone official to listen and help him. He has a PofA registered but not actioned, so this can now be made effective.

It is a shame we needed to intervene to get SS to help, but to be fair, they reacted really quickly, at a tricky time with Xmas holidays so we are grateful to them.

Appreciate we are not there yet but feel more positive. It is very sad and Dementia/Alzheimer's is such a cruel illness.

Your update sounds positive OP, luckily in our case the decision was pretty much made for us as my dad (Parkinson's) had a psychotic break in the summer and was hospitalised with the intention being he'd then go to a ward for rehabilitation. But, he wasn't in a fit state for that so they suggested he either came home or went to a nursing home for assessment and we persuaded my mum that it would be better for him and her if he went to the home. As things have turned out, he'll stay there. My mum feels guilty but she's in her eighties and with all the will in the world, she's got to the point where caring for him 24/7 was too much, and he didn't recover from his episode in the summer, is now in the grip of dementia and at the point where we all hope, for his sake, that the end will come sooner rather than later.

Sometimes I think things get to the point when you have to think about what's best for both parents, the one doing the caring as much as the one who needs care. It's a hit easier for us, the children, to see the bigger picture as we're one step removed. I hope things work out for you all, but be aware that it might take your dad done time to adjust, he may have feelings of guilt, that he's let her down somehow, and he'll miss her, even in the days that he knows it's the right place for her to be