Alzheimer's - Live alone or 'forced' into care home?

[AnyName1]

Which do you think is morally right, and best for the patient?

This man has no family living within two hours away. He has an adult child who will not make any decisions regarding his care, and won't allow anyone else to do it either.

A family member two hours away could go to court and try to get the power to have him go to an appropriate home.

Patient absolutely does not want to go to a care home. By going home he will be alone in a very isolated area, if he wanders (which he does) he could very easily die. Home help is the only visitor.

Should I stop fighting and let him go home, to die.

He's only going to get worse and dying would honestly be a blessing, but obviously it feels like I'm wrong in allowing this to happen.

Does anyone have any thoughts? What would you do?

There are several very specialist services in the care sector that can handle this and keep him in his own home

Have you talked to the sw ? They can advise amdbapply for funding

Thank you, I'm in a different country, but the systems are similar. He will have someone come in each day for 30 minutes. Do you feel that is enough? Genuine question.

I'm in too deep, I've been worrying about it for so long that I don't know what's reasonable or not anymore!

Is there a social worker involved?

If he lacks capacity then there needs to be a 'best interests decision' made which should take into account what his likely preference would be if he did still have capacity. If you know him well then you can perhaps act as his advocate.

Sounds like a tricky situation so you have my sympathy. There is often no right answer and the least restrictive option is usually best but may need reviewing as his condition worsens.

"Which do you think is morally right, and best for the patient?"

It depends. We are going through this right now with MIL.
She stayed at home until she really couldn't cope any more. She was adamant that she wouldn't go into a home, but she was totally unable to look after herself. We live 2.5 hours away and SIL lived half an hour away. MIL had carers going in 3 times a day. She also had OH's cousin calling in most days, but she was lonely - very, very lonely. She wanted someone with her all the time, and sha also needed someone with her all the time, and it wasn't physically possible, so she went into care about 6 weeks ago.

MIL is in poor shape physically now and has had cellulitis, a UTI and now a chest infection one after the other. She is in hospital, and TBH I don't think she will be coming out. Sadly, I think the end is near. She wants to die.

Pressed post too soon. The social worker said that they had a duty of care towards MIL and the decision was more or less taken out of our hands.

shaggedthruahedgebackwards (love the name) I've asked his GP to get him a social worker but the GP is useless and I've also called social services but nothing as of yet. Everyone just delays and delays. It's infuriating.

He's due to be discharged from hospital this week and I've told them he'll die if he's discharged but they can't do anything either.

LoniceraJaponica thank you. My sympathies, it's so hard.

Did she agree to go to the nursing home or was she beyond agreement?

Does the person himself have the capacity to make his own decisions despite his Alzheimers?

He may have a wish to be at home but can he understand what that will involve, what care services can be provided, weigh up the pros and cons of this and make a decision.

Capacity involves 4 things:

Understanding the decision to be made and any information about the decision

Retaining the information for long enough to make the decision

Using the information to make the decision - he should be able to weigh up the pros and cons. He can weigh it up and make what you think is a bad decision but for example saying 'I don't need that because I never wander' would count as not being able to use the information as it is patently untrue.

Communicate the decision

From what brief information you have given, the person is able to tell youhe wants to be at home. However there is no information on how he has reached that decision and whether he can retain the necessary information and weigh it up. If he can't do that, he doesn't have capacity and a Best Interests Decision would be made.

So it isn't as simple as whether or not he does or doesn't want to be in a care home. Most people with dementia reach a point of needing 24/7 supervision by the end of their lives, and will be unable to make this decision themselves.

Where is he now? Is he in hospital? They have a duty of care to make sure his rights under the Mental Capacity Act are upheld and also to ensure a safe discharge.

She would never have agreed. She has always been stubborn, but the alzheimers meant that she became more outspoken and obstinate. She was beyond agreement. SIL has power of attorney because it was obvious a few years ago that MIL was unable to pay her bills or do anything that involved any kind of intellectual capacity.

Alzheimers is horrible.

My only advice would be to put your fears in writing (email). A put them ‘on notice’ type letter.

State the problems and what, if any help the gentleman is receiving. That you do not feel this is enough to ensure his physical safety.

There should be access to a SW through the hospital. The ward team usually do an assessment of ‘fitness to be discharged’ which should include help at home etc...

Or your local authority should have an adult social care dept. I’d start with the ward/hospital first.

FIL also went into a care home. He also would never have agreed - funnily enough he also had a stubborn personality pre-Alzheimers too.

It was slightly easier than your situation as he lived with MIL and I had badgered him into POA, just in time. She took him to a day centre attached to a care home once a week.

One week she took him there for a respite stay - they kindly ushered him to a room instead of MIL taking him home at the end of the day. A week later MIL realised he needed to stay permanently and she never took him home. It was the right decision all round but FIL could never have made it and had he been consulted, he would not have understood and it would have hugely distressed him.

AnnaMagnani Thank you for your reply. No, I don't believe he has the capacity to make the decision. I ring him twice a day and he can vary wildly. 95% of the time he is confused. He thinks he's in danger and is asking me to come and get him but not sure where he is - usually he thinks he's in a different country - but he is at home.

HCPs are telling me they can't force him to go into care against his wishes. I could go the court route but is it the best solution for him? I think that's where I am now. He's living in terror.

Which HCPs are telling you this?

I would keep escalating, there should be a Safeguarding Lead at the hospital who is usually a good person to talk to.

It sounds like either they have not done a Capacity Assessment or the one they have done is v superficial - 'he says he wants to go home and he seems OK while we are chatting so that's fair enough'. I see a lot of Capacity Assessments like this and they are not proper assessments. He would really fail as he hasn't taken into account the real info of 'you say you want to go home but when you are at home you are wandering everywhere, can't remember where you are and ring up AnyName1 in a panic 10 times a day. How will you manage that?'

He needs to be assessed by Psych Liaison in hospital, I'd insist on speaking to his consultant, want to raise a safeguarding issue and if necessary complain to PALS.

Thank you for this Anna, I will write your questions down and go through them tomorrow with the hospital staff. It's a small country hospital , more of a convalescence place really, so it's hard to figure out who's in charge. They just to refer me to his GP all the time - who only accepts telephone calls on Wednesday mornings...

Is this in the u.k. if you feel he is a danger to himself being at home then you can email the hospital social worker, the delayed discharge manager, the PALS office, his local adult social services safeguarding lead and his g.p.

Thank you HoleyCoMoley but it's in the Republic of Ireland. I will try the social services again tomorrow.

So you are the relative living a few hours away?

Sorry you’re in this position.

I would write to the hospital (by email) setting out my concerns about his safety at home, and copy it to his GP and local social services, if there is state funded provision where you are.

If it was my parent or sibling and I could afford it I would probably take legal advice and go to court.

If you go onto the nidirect adult protection gateway services website it helps you find the relevant safeguarding teams according to which area he is in. You can only do so much.

Loopytiles Yes, I shouldn't have bothered trying to be anonymous. I'm his niece. His son child lives in the UK - and won't give me power of attorney - but also won't do anything to help his father. He doesn't visit him or deal with any HCPs.

I have written to his GP and PHN, they know what's happening but still nothing changes.

"son child" I'd never make a spy.

The hospital rang me today to tell me my uncle was anxious to go to his brother's funeral and could I bring him and return him to the hospital. My dad's not dead.

He cannot give you power of attorney, only your uncle or the court of protection can do that. You can apply for guardianship if you want to through the gov.uk website but it doesn't give you full p.o.a. If he lost mental capacity there will be limits to what decisions you will able to be involved in.

Ah, if the patient is in cottage hospital in the ROI that puts a different spin on things.

I am not familiar with Ireland law and laws on capacity may be different - however I would suspect the general principle still stands - he does not have the capacity to decide to go home and he is not being adequately medically managed.

Your example of hospital saying he wants to go to the funeral of someone who is not dead is precisely the problem. He is telling the hospital a lot of shit, the hospital are believing it all as true and they have no conception of the depth of his confusion.

As is it a cottage type hospital, it probably has v few services, and his GP is likely in charge of his care which is why the nurses keep referring you back to him. You need to speak to the GP in person, somebody must be doing ward rounds at the hospital.

The son can't grant you power of attorney, it can only be done by your uncle himself if he has capacity to do so and I would strongly suspect he has not. Also I don't know what the ROI system is for Power of Attorney is - it may or may not be exactly the same as the UK one but it would be entirely dependent on your uncle being capacitous to decide.

The best way is to give them concrete examples of how stuff he has said in hospital (and they have believed) is not true.

I'd then ask how they assess a person's capacity to make decisions and whether they think your uncle has this capacity.

They seem entrenched in thinking 'he wants to go home, we can't breach his human rights' but have not given you any evidence of how they have assessed his capacity to make this decision beyond 'he wants to'.

You could try Probate Ireland website, information on there about different types of p.o.a. and wards of court.

Thank you both so much for all this information, I really appreciate it. I'll contact the Probate site tomorrow and see what they recommend.

Thank you. I'll update.