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.

Well most people do not want to go into a care home and it's usually only advised if it's absolutely necessary. It does seem that the obvious solution is to find a place in a care home near you. This is exactly what I had to do. Was my mum happy about it? Absolutely not but she is completely paralysed down one side, hoisted from her bed to her wheelchair and still insists she can walk, will easily be able to look after herself and get a job when she goes home.
It's a heartbreaking, hard decision to make but, from what you say, the current situation looks like a house of cards that will topple soon. I am the only person to help my mum too and it's been a nightmare to Ultimately though, it was the best decision for my mum and has taken a huge amount of pressure off me. I wish you all the best.

TBH people assessed as having capacity are entitled to make what others see as ‘unwise’ decisions, e.g. continuing to live on their own in their own homes, which may well be unsuitable for an elderly person prone to falls.

You say you ‘might’ now be able to stop her driving ? This really jumped out at me. You need to stop her immediately - she could really hurt herself or someone else. Make it a priority to let DVLA know asap so that she literally can’t drive again.

I have reported her to the DVLA theee times already!

That’s shocking they haven’t acted upon the reports ? You must be so worried for her safety and others 😔

Not overly.

I've done what I can so have divorced myself emotionally from the situation.

So to summarise where I am with mum.....

She has been determined as not having capacity but last I heard is going to be released back home with four carers a day with me visiting more often (once a month for a week) and once I realise she is getting ill, going down then.

There were two tests they did.

1. One was some sort of basic reasoning test where she had to draw clock faces and answer questions - she scored 9/30. |Without knowing what was asked I can't comment on this.
2. They discussed with her the options and for her care and asked her to explain how she was assessing risk, what might happen if she got ill, how she'd get out in case of fire etc - then went back two hours later and asked her to recall it all. Apparently she could not recall very much of it. the problem I have with this is that the indicators they are using to suggest she does not have capacity are traits she's had her entire life - refusal to ask for help, stubborn to the point of self destruction and refusal to engage with medical teams. She's doing it now at 80 and did the exact same at 40/50/60.

I'm not trying to say she does have capacity, she almost certainly does not at the moment, however I don't think they can or will distinguish sheer stupidity from lack of capacity.

I don't think her release is going to happen anytime soon mind as they still have not got her out of bed and I'm trying to find out why but the ward hardly answers the phone. I'm now getting worried about her mental state deteriorating further as they are effectively leaving an 80 year old woman lying in her bed all day with little stimulation. I'm going to keep trying to get an answer.

If her return to home does not succeed then I will effectively move back in with her. I've spoken to her friends (all two of them) and the limited family I have left and the general consensus is:

1. She would rather be dead than in a nursing home - she says it now but she's also said it all her life
2. If she ends up in a nursing home, any control she has will effectively be removed from her but they won't allow her to die as they'll treat every infection, every ailment, every attempt to refused food or water which would be the only control she'd have left

This is one of those occasions where a living will would have been ideal to express in advance where a lethal injection would be appreciated. I know for a fact that if there was the option, she would have made one out.

I may come across as hard and cold but I'm trying to do what is right for my mum and that is to try to do what I know she would have wanted.

So she wants to go home and die.
But this could be messy and painful eg last carer visit is 6 pm and first is 9 am
She could be 12 hours lying in agony

You moving in with her. Be careful she could live to 105 years with good care

I have no intention of making her do anything she doesn't want to.

I think most old people don't want to go into care. My husband's parents have always said they wouldn't want to, either.

But there's little option when you reach this stage, really. Your mum is very lucky that you're willing to move in for as long as she needs, and advocate for her when she's willfully ignoring questions.

How long can you live with her, realistically? Six months? Five years?

I'd be concerned that once you do that, there is no way back for you. She'll know it is an option, and it'll always be her preferred one.

I do admire how selfless you're being, and the strong intent that you have to stick to her wishes. I also presume if you were there, you'd be able to stop her from driving, which will be a benefit for everyone - if she doesn't want a care home, she definitely won't want a prison cell.

im sorry but you need to make her. She is a danger to herself and others. Take the car away from her and her keys. Make the arrangements she clearly needs a care home. Most people would rather die then go to a care home but sadly life isn’t like that and people like your mum actually need one. She’s too stubborn to say when she’s not well and needs help. You can’t be there and have no family nearby, she needs a home. How many more trips, falls, accidents will it take . If this was my mum I’d help her any way I could not just say oh she doesn’t want a care home so I won’t take her. Your mum needs a care home.

See how it goes with 4x carers a day.

It is up to you but living with her as full time carer could be tough. If she declines and is incontinent etc ...

Her wants do not trump your life and needs.

Unfortunately no one know if elderly relative will live 5 more months or 5 more years ! They look ill then bounce back...
If she lacks capacity to decide where she can be best cared for you can make a tough decision

I was not referring to her driving.

I can move in with her if I need to.

What I mean is, if she chooses to go on a hunger or water strike, or refuse to take her medication I won't be making her eat /drink or take it. Where as a nursing home would.

I am 100% certain as are her friends and family that if she has capacity, that is what she would choose.

She would not want to be kept safe just to live an existence sitting in a chair in gods waiting room. Having infections and ailments treated just to extend her existence.

You can look at death with dignity website but legally you could maybe be held accountable if you sit and watch her die over several days from not eating and drinking .... get some legal advice....

Where do you get your information about enforced medication/food?

My mother's GP actually asked us to complete a form about her wishes as she got older; she said she wanted a DNR, if she had any infection or illness, she was happy to have pain killers but not any antibiotics, to allow nature to take it's course.
When in hospital, she was encouraged to eat and drink, but they couldn't force her.

There is nothing stopping you from putting her in a care home near you

I don't want her in a care home anywhere! Its either me move in with her or I move her in with me - if that is what they are going too insist on.

I'm currently waiting on them to call me. Frankly I think they are judging me from afar as I have not been into the hospital to see her.

I have been in your shoes. If they have decided she does not have mental capacity to make care decisions there is a process to involve social services and they will hold a best interests meeting. You can be your mums advocate at that meeting to discuss what is in her best interests. Clinicians also attend and there will be a discussion about what care can be provided by the LA or by family or privately and when and at what cost and what your mum would want and if that is possible. It will consider her safety at home, whether there are things that can be put in place. Stair lift, adaptions, key pad, doorbell camera. They assessed my mum needed more than the 4 x day max package and she needed overnight care. We found (and pay for) live in care now. That’s how we got her out of hospital as she was adamant she would not go into a home but unfortunately has lost the ability to understand the extent of her care needs. It’s hard op if that’s where you are. Google PALS and the mental capacity act. press the hospital to give you the info and get hold of adult social services, find the cockroach cafe on mumsnet. If paying for lots of care isn’t an option you should look at care homes, if not for now then for a bit further down the line. Many have waiting lists. You will need to get on top of the SS bit, I really pushed to get a social worker allocated and then to get the meeting arranged. Weeks can drift by if you don’t as they are snowed under.

My concern is their definition of best interests. I suspect theirs is to keep her safe and alive for as long as possible where as hers would be, mine and her friends and family are,’that she should have minimal intervention and let the next infection take her out.

That may sound callous but it’s not. I come from a family that freely talk about death and are rather matter of fact about these things.

Politely asking does your insistence that she won't go in to a home have anything to do with you not wanting to lose your inheritance?

Care homes don't force feed, they may call a doctor is someone is very unwell, they often make a decision to just treat the symptoms like giving painkillers and antibiotics if there's a very bad infection that's causing distress. There will also be a ceiling of care and decisions around further treatment and hospital admissions. People die all the time in care homes and are given end of life support. If mum becomes ill and distressed presumably you'll call the doctor.

To give you an idea of how stubborn she can be - when I was three she signed herself
out of hospital with meningitis so she could be home for my birthday - she was 35 at the time and definitely had her marbles.