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 9/30 assessment sounds like a MOCA, I hope they have a license to administer that.

What are her infection markers? Ie if she still has an active infection room eg UTI I wouldn't say it's a fair capacity assessment.

Yes your mum needs to be able to retain information and problem solve / understand risk. But people have the right to make what most may deem as an 'unwise decision'.

In my experience it is unusual to go from no carers to a care home. I would argue she should be given the chance to try and live in her own home with carers. Based on her personality / character this would arguably be in her best interests.

Have occupational therapy been involved at all? Is she in an acute hospital at the moment? If so can she go to a community hospital for further assessment.

Read up on the mental capacity out act and be prepared to fight for what you think is right whilst being realistic to her needs.

She's in hospital, it will be the OT that did the MoCA, confused therefore about the 'license' part.

You know your mum best.

If it does come down to you to make the decision, take on board what the professionals are saying but ultimately do what you think is best for her, and her Wishes - both what she says she wants now and what she says she’s wanted in the past, form a really big part of that.

If she’s said before she’d rather die than go into a care home then it sounds to me like if she could make a decision now, she’d be willing to take some risks to stay in her own home rather than go into a care home, even if there’s a chance that could shorten her life.

it’s a valid decision, quality of life over quantity.

She has had 3 recent hospital admissions, what would you gave done differently, she obviously needed treatment. I don't know why anyone needs a licence to carry out a capacity assessment. You get the training.

(Experienced social worker with the extra qualification to do mental capacity assessments and best interests assessments)

Not always floral, in fact rare, especially in acute settings. At least around here. I believe you now need a license to perform a MOCA, which many who are still administering this assessment haven't got. Happy to be corrected mind.

I thought from 2020 those OTs who underwent the moca training were then given a certified license to perform it

I think that's correct missmoneypenny. I believe it costs to do the training to get the licence, so many employers didn't want to pay when other assessments are available for free.

Sorry, missmoneyfairy!

@ScottishScouser it sounds like you are doing a great job of advocating for your Mum and making decisions in her best interests

To echo what others have said I would put clear boundaries in place regarding 'moving in' with her if she returns home and make it clear to those involved in getting a care package in place that it is a temporary measure only

@ScottishScouser rather than a DNACPR ask the GP (or hospital) about a ReSPECT plan.

Info here: www.resus.org.uk/respect

It covers both CPR and things like what treatments people would or wouldn't want and if they want to focus on quality or quantity of life. People can complete it themselves with their healthcare professional or their LPA can complete it with their healthcare professional.

I'm glad a care package is being arranged.

Given your Mum has had a UTI it is likely she has had some delirium and will need a period to recover. It might be useful to have her capacity around her care reassessed in a few weeks (it also might not be useful as you might find she has regained capacity and decides to sack the carers! And there will be nothing you can do about it).

Capacity can and does fluctuate and infections can often affect it. It's also decision specific, so just because you don't have capacity at one time for one decision doesn't mean you won't have capacity at another time for a different choice. For example my capacity to decide anything prior to having my first 2 cups of coffee in the morning is considerably reduced

She should have a treatment escalation plan and some advanced care planning done. If she would not want life prolonging treatment then with one of these in place no one could as you put it "force her to do anything".
In a NH they cannot ethically force anyone to eat and drink!!

Also. I think you will find caring for your mother 24/7 extremely difficult. Wait and see what her mobility is like. Before you make any decisions. If you "leave her to die" you could be criminally prosecuted for neglect!

I have recently had the same problem when my mum was in hospital. They wanted to put her into a care home. She has always said she doesn’t want to go into a care home. We now have a live in career which seems to be working well.

"(it also might not be useful as you might find she has regained capacity and decides to sack the carers! And there will be nothing you can do about it)."

Been there before - got the T-Shirt, the bag, the fan poster and the signed loo roll - fully signed up groupie of the "she's sacked the carers" tour!

When Spoke to OT last week they were in agreement to go for the go home and then assess but I got the impression on the phone to the nurse last night that they may now be thinking something different. However no one has bothered keeping me in the loop.

I really do get the feeling they are judging me for not going in in person- no matter how much I tell them I always go down for a couple of weeks after she is released.

I'm going to head down either tonight or tomorrow as I think I need to be in person to sort this. Also have a feeling they have sidelined her. Have a shed arriving so cannot leave until it's here.

I haven't real the full thread but I just wanted to reassure you on the issue of treating her for every infection/ailment.

I have LPA for an elderly relative, I have signed the DNR. I am contacted when she is unwell, in the last 12 months I have discussed whether she should go into hospital when she was very unwell. The doctor was willing to admit her but didn't feel it was necessarily in her best interests. I agreed and we jointly decided she was staying where she was and nature would take it's course. She recovered.

I have also been contacted when she had an infection, doctor again willing to prescribe antibiotics but wanted to know if I was in agreement. We again agreed on a decision and she is still with us.

She is very frail, older than your mother and in no way able to make decisions for herself but I feel I have been fully involved in decisions and in no way has she been treated with medications/hospital admittance without my agreement.

How do you think a care home would force her to eat or drink? Do you imagine literal force being used on an 80 year old? That isn't going to happen.

Sadly this sort of situation just gets worse and worse for both sides. The elderly parent doesnt want to go into a care home (who does?) and the child (it often seems to be ONE of the siblings - the others just stand back) takes the burden.

You fear going on holiday because of what could happen. Only you really know how your Mum is but be in no doubt. This situation can take over your life.

Good luck op

Hope you are doing ok Op. we got very close to having no choice but a care home which I argued strongly would finish my mum off. I don’t have a PoA so your situation may be different but the bottom line with us was that SS had the power but worked with us to get to where we got to which was home with live in care. But, they would not have agreed mum’s discharge in her case with less than that and we got to the stage that the care provider would not take her on the max package of 4x a day as they had taken the view (from the docs and from previous contact with mum) that this was not sufficient. So they decided she was not safe which as far as I could see over rode what she or I would like for her. If you or your mum have funds this will help massively as the options for mum to be at home were much better once we worked out we could pay privately for care. If she has £1000 a week (! Can’t quite believe I have had to write that) you could arrange live in care on a temporary basis - say 2 weeks- to get her home and stabilised. If she is genuinely able to live independently then you should be able to demonstrate that with the help of your live in carer’s assessment.

Another one saying if she needs to go in a home move her closer to you. I did this with my gran who also didn’t have capacity and also said she didn’t want to go in a home. She cried all the way there but she settled in well and was happy there.

I will be her live in care at least initially to get her home. I've talked it through with DH and family/friends and yet another conference call.....I have a suspicion that the hospital are assuming I won't be there because I have not gone down yet (no point, she's in hospital) so I'm going down tomorrow to try to sort this out.

Best wishes to you op. With you living with her and taking care of her she may live much longer than anticipated. This is a blessing firstly but one that you need to be aware of. How long can you live with her? 1 month, 6 months, 2 years? I really hope it works out for you

I want to assess if she really can or cannot live with a care package and I can only do that by moving in with her and seeing how she does with four visits a day on a care package once she’s home.

before this last hospitalisation she was not bad at home. She just refused to call the doctor when she was ill as “once they get their hands on you you don’t know where you’ll end up” and ended up falling.

Ow she’s in hospital with no capacity - which is ok and I get it.

hut four weeks ago she could make herself a cup of tea, make herself dinner, dress herself etc.

Her refusal to call the doctor is being seen as evidence she can’t look after herself but she would have done the same when she was 30 or 50. She doesn’t trust medical people and never has.

She can’t transfer from a bed to a chair or stand up from a normal chair but at home she has a riser recliner that she sleeps in and stands her up. She’s slept in it for 8 years. Again, this is not something that indicates she can’t cope just because she can’t get out of bed from a lying position or stand up without help.

Sorry for all the typos - on my phone and I end up crying several times a day.