Mum being certified as not having capacity............ massive dilemma re care home and care package

[ScottishScouser]

Hi

So, my mum is probably going to be determined as not having capacity to make her own care decisions. I sort of knew this was coming and we already have an LPA in place for health and finances so I can step in. I'm an only child so this all falls on me.

She's currently in hospital having had a crisis last week and ended up having a fall. She's been hospitalised and released twice times recently and each time has been back in hospital 3-4 weeks later.

Then first time she had pneumonia and was released after she was well then about 4 weeks later she had a UTI that sent her a little odd and she was back in

The second time the UTI was cleared up and she was sent home although tone fair she was never 100% right in herself.

Two weeks ago she got bad diarrhoea which led to low blood potassium and then ended up being admitted back this time.

However the difference is this time, OC have done a capacity test and she seems to have failed. I'm not 100% sure about this since I know my mother has always just ignored questions she doesn't want to answer. They have focussed on the fact that when she fell, she didn't press the lifeline on her fall alarm bracelet. That, however, is because she has always said she didn't want it and didn't want to cause a fuss. My issue is not with the test however as I'd rather have the power of attorney so I can insist on being kept up to date with what is going on, talk to her GP etc.

My issue is this:

She has poor mobility but she can walk around the house with aids and can make her own tea, sort her own food. She has never left the gas on, wandered off, or done anything dangerous. In general she knows where she is and is with it.

If she co-operates with a care package I can't see any reason she can't return home. I live 350 miles away but I do go down to visit every 6-8 week s and I can increase that to once a month if need be. I speak to her twice daily and can drop in her using an Alexa so I can check on her. She has a friend who pops in most days and can help her out and also an uncle of mine who although elderly himself still drives and often goes to visit her.

I got the distinct impression they were looking down the care home route but I have an issue with this for two reasons:

1. She does not and never has wanted to go into a care home. She has always said she would rather be dead than end up there. If she did end up in there, I would have to do what she always asked me to in the event she ended up in one, which is ask for a DNR and not to treat any infections she might pick up but let nature take its course. I only had the same conversation with her six months ago. I have no idea if they would allow me to do that.

2, It would basically mean I hard ever see her. If she ends up in a care home, I'd have to sell her house. Which means there is no where for me to stay in the city that she is in. I'm not joking when I say there is no family - just me and an elderly uncle of mine who lives in sheltered accommodation himself. To go and see her would basically be a 7 hour journey to see her for a day and then return home or having to pay for hotels to stay down for a while. That is not sustainable for me. I doubt I would ever be able to get them to allow her to go into care up near me. I'd be one of those children that put their parent into care and hardly see them - but I don't see any way around it.

3, She cannot live with me. My house is unsuitable and it just is not a long term option.

I'm hoping to avoid the care situation and will try to do my best to fix it so it doesn't happen.

At least I might finally be able to stop her driving!

I don't know why I'm posting this but want to get it off my chest somewhere where people may have any ideas or words of comfort.

The lethal injection comment is awful. For that alone you should not hold poa over her.
You should go home now and stop abusing your mother.
I get that she's frustrating you, but that is abusive.

I am not abusing her - have you never snapped in a moment? Ever?

It wasn't a nice thing to shout and say put us all out of our misery, it makes you already sound impatient and frustrated ith her which is a concern if you insist she comes to live with you.

Your update shows exactly why they wanted your mum to go to a care home 🤷‍♀️ she can't/wont look after herself.

You are also not able to look after to her and that comment about the lethal injection is awful.

Has she ever been assessed by a mental health team? I wonder if she is depressed?

Most of the elderly people I know (I'm a community nurse of 20 years) who live like this and then end up in a care home find a new lease of life. They love having people around them, they make friends, enjoy the food and activities.

They're not the depressing places that you have to go to great lengths to avoid that you're making them out to be.

Yes, once. And in that moment I realised that I had to step back and leave her care to other people.
My mil lived with me for the last 10 years of her life with mixed dementia. I nursed her, fed her, cleaned up the shit she smeared all over herself, her bedroom and the bathroom. One day in the final 6 months of her life she was shouting at me and adamant that she had to get dressed to go and see her daughter.This is the daughter who lived 45 minutes away and only visited once that last year because she didn't know how to interact with old people with dementia.
Out of sheer frustration I shouted that her daughter didn't want to see her. That was 10 years ago and I'm still ashamed of myself for shouting at her like that.

I know I was wrong to snap. It is what it is and won’t happen again.

She has been assessed thoroughly.

The first test she did - the MOCA - she just refused to do. So failed especially when she refused to engage later with the woman who did the test.

Second test done by a consultant she passed and is now home.

In the last week she has been thoroughly assessed by a community team and her own GP. She passed.

The community team actually said if she wants to just sit there, never wash etc it’s up to her.

No one on this board has met my mother. Every medical professional I’ve spoken to has said they have never seen anyone quite so stubborn and bloody minded. A few have wished me luck. They all agree having met her that putting her in a home would not be a good move for her but that she does need care but at the moment won’t accept it and that’s her right.

Which is why if she Loses capacity she’ll move in with me. My house is big enough she can have her own room on the ground floor with a wet room next to it, separated by the kitchen from an area at the back of the house with the dining room and extension where DH and I can be. So somewhere where there is care from me and DH but separate for us to live.

The problem with my mums house is it’s small and you are on top of each other constantly.

Im here until Thursday then she’s on her own until she’s in hospital next time and we have the same merry go round.

Can you not just lie to her? Tell her that yes, she will be ending her days at home? Rather than arguing/ offering solutions? Just say ' mum you are right'.

This might relax things somewhat and take the pressure off.

Also I'd be dropping the rope. If she is deemed to have capacity then she can choose whether or not to allow the carers/you to support her.

And yes, there will inevitably be another crisis and she will end up in hospital and yes it will be incredibly frustrating for you as you will end up at square one, until she either dies or is deemed not to have capacity / has needs that are beyond the *4 carers daily.

And then she will end up in a home. With a DOL in place

And you tell her its a hotel and she is on holiday and there are no taxis/buses/ trains at the moment and she can't walk out because the weather is too bad and her coat is at the drycleaners.

Ref things like the car stuff, notify the bank that she's vulnerable and out of the norm expenditure can be flagged. Plus does she have the contacts/knowledge to actually do something like this? If she's asking you to be the middleman then again just lie, too expensive, too rusty, wrong colour, boot not big enough etc. My dad wanted to buy a car in similar circumstances but without being facilitated by someone (and no one did) it was a pipe dream. It would have been different if he'd wanted posh cake, or a new jumper.

It is a fine line, and sometimes you nearly fall off, but you need to keep yourself sane.

Get yourself to the cockroach cafe board.

Took me too long to type and I see you've replied.

If you do end up taking her into your home then make sure you get help to take the pressure off you, if she won't accept carers then have carers for you - so cleaner/gardener etc etc, so you don't end up run totally ragged.

It sounds great but she has said she doesn't ever want to leave her house or move in with you. She may well still refuse to live with you or accept any help or care from you, even if she loses capacity she still has that right and having power of attorney doesn't mean you can force anyone against their wishes without going through the proper channels, probably involving health and social services professionals.

This is what you need to tell them - constantly until they listen. Best interests should be related to the individual

@MissMoneyFairy

If she is ever determined as lacking capacity then If we can’t force her to move in with me how can they force her into a home. Same thing if she refuses.

Thats a bridge to cross in the future - but I suspect not distant future.

If/when she's lacking in capacity then you WILL be able to 'force' her to move, because the POA will kick in and you will be making a decision 'in her best interests' even if it's not what she says/thinks she wants.

If sheis getting up to go toilet and get food maybe she is fine for now
When she gets ulcers or house stinks from not washing herself then no doubt you can decide to act. ( frankly it was the stinking house which pushed to act for elderly relative who just said oh it s natural when old to wet yourself..)
As you say she prefers to do it her way. And you want to support her in that.
You can have a plan b for next time she ends up in hospital .
But insist on carers going in to check daily even if they only make her a tea.
Is there a key safe with keys?
Alarm call system ?

I have LPA for a relative in their 90s who sounds very like your mother. She needed care but would lock the doors so carers couldn't get in, run into the road and nearly caused several accidents, annoyed neighbours, turn away food deliveries we ordered, said she was eating when she wasn't. I couldn't force her into a home, she just wouldn't go and it is fine having the legal power to do it but the practical application of that is a problem. A social worker told me that all she could advise was an ambulance with the men in white coats who would just take her. I couldn't do that.

What I did do is book a place in a nice home and the next time she was in hospital I let them know she was being discharged, she was collected and said we were going for an outing. Her things had all been packed by the carers and were in the back of the car. We arrived at the home and went in for a meal, she presumably thought it was a hotel. So we had something to eat, carers chatted to her and I left. She kicked off when she realised what was happening but the DOLS was done and she has settled, gets on well with the carers and is having a much better qualify of life.

I would never have LPA for health for anyone, it is a thankless task. People just repeatedly tell you to "put her in a home" social workers don't help and I was getting phone calls from neighbours complaining about her, social workers wanting me to do something, 999 call handlers phoning to ask me to stop her phoning them. It was making me ill.

Even if a person lacks capacity the decisions taken on their behalf have to be in their best interests and that includes taking their wishes and feelings into account.

If you have H&W LPA it's actually your decision and no-one can force you to put her in a home if your BI decision is that she goes home with care (unless they actually take you to court to displace the LPA)

If there is no valid H&W LPA then it's a BI decision but family still have a right to be consulted and their views should matter.

Legally it is not so simple as a hospital 'putting someone in a care home' People do still have rights even if they lack capacity. If they are sent against their will lacking capacity they are therefore being deprived of their liberty and a DOLS order must be put in place and there are checks and safeguards on that. There is a best interests assessor who has to agree to the DOLS and the person has a right to a type of advocate (RPR) to help them appeal.

People who have capacity have the right to make unwise decisions even if old and frail. If it's her longstanding wish to die at home then it may be that's what happens if she does not choose to be saved from that outcome.

In this case here if OP moved mum into her own home against her wishes with LPA and she lacked capacity would there be a community DOLS in place

@MissMoneyFairy Hut what happens if the two options offered are both ones that she does not want.

if all they offer is move in with me or a care home and my mother lacks capacity and insists she wants neither?

Because if it comes to that I know that’s what will happen. I also know moving in with me is marginally preferable having talked to her about it but she still doesn’t want it.

I’m totally on side mum. What she wants I will to try to make happen if it’s the last thing I do. I will try to advocate for her with every breath.

Im going to look at getting a RESPECT form completed.

She actually took the not driving anymore better than I thought given previous attempts so maybe she is mellowing.

she had an upset stomach today and I had her cleaned and changed before the carers got here. My DH is retired and I WFH. There would be 24/7 care for her.

She has agreed she needs to keep a care package in place even after the initial six weeks which is also a masssive improvement.

its just so hard trying to parent your own parent. I may not like her at times but she is my mummmy.

You are posting on a public forum that you've told her you want to kill her - thats not ‘snapped in a moment’.
Maybe you’re not the best person to make any decisions about your DM - and thats fine! Leave everyone else to it.

If she is assessed as not having capacity anymore, the decision as to where she lives will be a MDT decision, it’s not just down to one person even if they do have POA. The person will be subject to a DOLs order first.

How is one couple, one retired and the other WFH, going to provide 24/7 care?

When do you spend time together? When do you sleep? What happens when you go on holiday or are ill? My work bans WFH whilst responsible for an under-10 or an elderly dependent relative.

No MDT involved, SW just said she needs to be in a home, not their problem I just needed to sort it. The only offer or suggestion was if she doesn't go the men in white coats can take her.

Oh for God's sake.

Do do you think they might section OP's mum if she is deemed to need residential care?