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.

I'm not surprised you cry, it's really tough! Would you think more about sheltered accommodation with carers coming in, or would your Mum be insisting on her home and no other?

I guess my problem is I know her personality and it seems you are expected to have a personality transplant when you get older to show you cooperate even if it’s against something you have always believed and done.

her behaviour at 80 in terms of cooperating with medics is exactly the same as at 30 - but now it seems to indicate she has no capacity. If you have suggested that to her at 30 and more physically able she would have lamped them with a chair!

It's difficult but the hospital will do what they can to try and make things safe at home. The ot may suggest equipment, a hospital bed, commode, rails. Sleeping in a rise chair isn't good for pressure areas so they hopefully will carry out a care assessment including her mobility, continence, skin. 4 times a say carer will help, she may be eligible for up to 6 weeks reablement. Even when you live with someone who is frail then you can't monitor them 24hrs a day and the hospital and community team have a duty to do what they can to keep her safe. Having poa gives you the opportunity to be involved in the care and decisions but it's always easier to all work together, if the home carers feel she needs more help they also have a duty to report it.the social worker, therapists,nurses and discharge team will all get involved in her discharge planning.

I'm an OT in an acute hospital with many years experience in this sort of situation.

I presume your mother does not have a cognitive impairment normally or a diagnosis of dementia (the score of 9/30 with a clock face sounds like an MMSE where a score of 23 and above is deemed normal so severe cognitive impairment at 9), these should not be carried out when someone has an infection or delirium which older people often get with a fall/illness/hospital stay, as obviously it would be a false score.

As an OT I should always find out a person's normal habits e.g the fact that she has slept in a riser recliner for years would instantly tell me that she is unlikely to be able to get her own legs onto a bed and i would not use a bed transfer as part of the assessment, however, her ability to not be able to get up off a normal chair would raise alarms for her being able to get up off the toilet and this would need assessing with or without equipment which could be supplied.

Her refusal to press her pendant alarm ('I didnt want to make a fuss' 'I didnt want to be taken to hospital) is common and can be easily resolved by ringing the company and getting it changed for one that goes off automatically if she falls. Plus it being in her care plan for the carers to make sure she is wearing it at each visit.

The carers being talked about are probably an assessment service, in my area called discharge to assess (DC2AX) which will be an in house team including therapists who will be able to assess her in her own environment prior to deciding long term plans such as whether long term carers required or how many times a day. They also have temporary care home placements within this service if she needs more time to physically get over the hospital stay ( such as if unable to toilet herself) until able to have the service in her own home. So do not presume if they recommend this that it is a permanent care home being suggested. Years back we used to have rehab wards within hospitals but this is no longer the case.

When you get to the hospital just ask to speak to the occupational therapist involved in her care as they are usually the main organiser/advocate for the patient and relatives.

@Mossstitch

Thanks for your input - my reply is longer than I intended but I think I'm using this thread to Vent at life and give my poor husband a break.

The toilet she uses is actually a "mrs browns boys" under stairs conversion that has been there years. Because of its nature - there is actually a ledge in front of her with a bar we put in to help her get up off said toilet. She also has one of those riser things on the seat that turn it into a Glastonbury long drop!!! (my gripe is the one on the upstairs loo makes it impossible to have a crap without leaving marks that need cleaning every time as you miss the water with normal arse placement).

The upstairs loo has bars either side to help her up.

She's been disabled for years so we have already put in lots of kit for her. they haven't actually asked me about any of it.

As for does she have cognitive impairment - I would say not to the extent that alone should require care.

She mistakes the sky remote for the telephone and vice versa - but I've also been told thats relatively common in the elderly and to be fair - the new sky Q remotes do look remarkably like the phone - the old sky+ ones were at least significantly different.

She has the memory of sieve but always has had and as do I. I'm apparently extremely intelligent and bright and my exam grades do back this up (A-level maths when I was 11, GCSE when I was 9, rest of my GCSE's age 14 for example) however I have no common sense and if you ask me to do something unless I write it down I'll forget if I don't do it immediately. My mum has the same but unfortunately was not very bright (I take after my Dad) - she thought the Eiffel Tower was in Blackpool, Scotland is apparently not part of the UK. She does have common sense however (except being told what to do and engaging with medical staff). I'm sure she would be diagnosed with that demand avoidance thing if she was younger. Demand she do something and she won't.

I actually looked up that MOCA test people referred to. I got my husband to test me with it without looking at first. The animal one I can almost guarantee she wouldn't know. I actually failed the word memory test as I presumed I was not allowed to write the words down. There is no way she would ever have been able to do the subtraction test without a piece of paper.

Her writing ability deteriorated about 10 years ago - she can tell the time if you asked her to look at a lock - but drawing a clock, can guarantee it would be a mass of squiggles. But again, she never really wrote anything so it was never great. She was a school cleaner and later a supervisor but it was all manual.

The ability to recall what was discussed in terms of risks of being discharged home. The OT did say she kept closing her eyes and refusing to engage - and yes I can just see it as she won't engage with medical staff. Years ago she never ever trusted them - I think her entire family blamed doctors for the death of her brother when he was a kid. I emotionally blackmailed her into getting a knee replacement and a hip replacement. The knee one failed after 18 months and the hip one caused her to be in hospital for 16 weeks with an acquired infection. After that, and I quote, "they are never getting their hands on me again"

This is one of the reasons I'm going down so I can try to see what's going on better,

You dont need to say how difficult all of this is for you but forgive me - I am trying to help. You seem to make reasons and dare I say it excuses for the way your Mum is as though you might be in a bit of denial.

Yes, the remote control/phone is very common but some of the other things are her trying to hide and fib what is really going on. Falls are a killer for old people. Its what a lot of them are in hospital for. The are told to use some walking aids and some do and some dont, some use them some of the time but take a risk in certain situations. My late Mum was like this. I found her using the furniture to move around her retirement complex but of course the furniture is not made to help the elderly move around. She probably fell more than she admitted but it was just the falls where she couldnt get up that I knew about.

As a PP said OT are good and there are lots of very clever aids to help an elderly person. Whether they are used properly is another matter.

How did you emotionally blackmail her into having surgery. Is this what she thinks,

If she has made it clear that she would hate a care home, then it would be cruel to put her in one. It sounds much better for her to have a care package as she keeps her independence and she can remain in her house with all the associated memories. If someone comes in say three times a day, even if she were to have a fall between visits, she wouldn’t be lying there for long and you could now insist that she presses her call alarm should that happen.

Move to a care home near you this is absolutly possible
She will fall again and become unable to cope at home very quickly

People can lay for hours after a fall, they can be on the floor all night and even if they are found by family or a carer it can be hours before they are assessed by a medic, many carers will not just get someone off the floor until they have been assessed for any injuries. You can get falls mats, detectors and alarm which can be linked up to the responder, you need a keysafe too.

We have a key safe. My mum has been using crutches for nearly 30 years so there is no danger of her not using them now. She would not accept a zimmer but has a trolley with breaks that is effectively one that she uses. OT have said as good as a zimmer and allows her her pride.

i am seriously not in denial about her ability physically at home.

what I am questioning is whether her cognitive ability is so low she can’t make decisions because knowing my mum and the way the tests were explained I can easily see how someone in a medical setting who does not know her would fail her.

I am prepared to go down and look after her in the short term. If it’s still determined she cannot live alone with four care visits I will move her up here with me. As much as she won’t want it if I give her the choice of that or. Care home she’d go with that.

i can turn the front room into HER room and the downstairs loo into a wet room. That would give me and DH the kitchen, dining room and games room for us.

We moved an elderly relative to a care home near us. As only people that would visit this relative it made no sense for them to be 5hrs away from us. One care home is very similar to another ..they never went out to see the local area.

we struggled to get them moved as social worker and council wanting the relative in their area…. Despite the fact they had savings and a house to sell. They funded their own care home. Nothing left though. I was not prepared for strangers to choose a home.,l the two they wanted were rated inadequate.

it cost a lot of money the 2yrs before in a care home visiting and hotels. Regular visits.

And we also have a garden room or man cave which DH could use when she winds him up so much he fancies committing murder.

But maybe that’s the risk the mum is willing to take in exchange for the freedom of not being in a home.
I know I would!

So I’ve just spoken to her! Her phone was finally charged for the first time in days.

When I said to her about filing the capacity test she said - “what? The questions you wouldn’t ask an infant? And as for having to confirm risks, I’m 80, I know what risks are. I would not give them the credit of answering!”

Hence proves my point.

I thought I'd give you an update on my mother as you were all so helpful.

So, she came home a week ago and I've been here since. She was certified as having capacity by the doctor (and she does) so she was allowed to come home as that is what she wanted. That was a week ago.

Since then, she does nothing apart from sit in her chair watching tv and go to the toilet. Which is fine but she won't let the carers help her do anything. She washed her own hair over the kitchen sink on Monday but that is it.

She won't let me or the carers help her wash. Claims she can do it herself but the doesn't. Says she'll do it when she's ready.

She has to be nagged to change her nightdress even when it's clearly stained. She can change it herself but because I suggested it, she won't.

She is still 100% adamant she will never leave this house even if she loses capacity.

I've said to her she won't be going into a care home, she'll be moving in with me and DH in a converted room.

She won't do that either.

When I try to explain to her she may have no choice, she just says "Yeah, ok" in a way that means she doesn't believe me.

If she does lose capacity and the ability to insist she comes home, I'm not sure how they are going to move a woman who refuses to........ but we will cross that bridge when we come to it.

She won't let the carers do anything for her - well she will at the moment vaguely allow them to put the cream on her legs but only because I'm here. when I go home next week, that will get stopped.

She is fully aware of the risks of not doing these things - she just won't do them.

She knows what she can and can't do but she won't let anyone help her with the things she can't do. As she said to me yesterday, I'd rather be dead than have to let anyone wash me. And no, that is not dementia or lack of understanding - its the same thing she's said her entire life.

I actually shouted at her that believe me, if I could get her a lethal injection I would to put us all out of our misery but I can't.

The only good thing to happen this time is one of the doctors told herin no uncertain term she can't drive anymore. the DVLA have finally written to her from the report I made in January and she has 14 days to fill in the form with all her and her doctors/consultants details. I said to her that I can fill it in a delay things a few weeks but ultimately she's going to have her licence cancelled. She's accepted this but stupidly still wants to order a new car so I can have whatever car I want when I visit her - I can hire a small car for the week for £100ish - and she wants to give up her DLA for 1 week a month. Stupid. I'd have the keys so no danger of her sneakily driving.

So I 'm going home next week and I can guarantee 3-4 week after that, she'll be back in hospital and the merry go round will resume.

I've also activated the power of attorneys now rather than just having them in place.

I might keep this ticket updated going forward as a place to vent if you all don't mind.

I actually shouted at her that believe me, if I could get her a lethal injection I would to put us all out of our misery but I can't

This is terrible!

Soon. You honestly become completely overwhelemed with the parent behaving like this and there were a number of times when I wished my parent would pass (they wanted that too). This parent is selfish and self absorbed. They want to take and take from their children. Of course sometimes its the illness but it doesnt stop the carer being totally devestated with what is happening. They dare not go on holiday because of what could happen.

They are literally at the mercy of someone else.

And yes, 'the I wish I was dead' I heard many many times. Still didnt stop them fror messing around and doing stupid things and then expecting me to resolve remgardless of what I was doing at the time.

Just take the keys away then she can't drive just say the dvla and Dr told you to do it.

Reading your update OP, I actually think your mum's playing a cruel, manipulative game with you. Having you jump through all the hoops, worrying, trying to organise things that she says she doesn't want.

Maybe it's time to take a step back and not be as available to her and let her live her life the hard way. She's been deemed sound of mind now so it is her choice to live like this.

Although the car/driving thing? That's been officially sanctioned that she shouldn't drive so don't enable that in any way shape or form. Keys away from her NOW and tell her if she buys a new car you will report her. Be tough on this one.

Living like a tramp is one thing and harming nobody but herself (and frustrating the hell out of you but...) but potentially endangering the lives of others is quite another.

I can understand the frustration you must have been feeling to come out with the lethal injection comment. I've had similar conversations with my mum out of sheer, utter frustration. Ultimately though, all it achieves is the attention all being on her/about her. Again.

Does your mum care how this is affecting you?

While she has capacity she might want to complete a Respect form, she has made it clear that she doesn't want to move into a carehome or move in with you, what does she want. You have to respect her wishes, she will inevitably become more frail and end up going back to hospital, if she does lose capacity it would be very difficult for her to move against her wishes, no one would sanction any distress. I'm now sure shouting at her ever helps and she has every right to refuse care, hopefully the carers have told their manager.

@MissMoneyFairy

she wants to just keep coming home. In fact to be honest she never wants an ambulance called even if the outcome is death. She just wants to be here and die here.

the problem at some point I’m going to run into is social services won’t let that happen if she loses capacity.

And she isn’t driving anymore if you read my update properly!

Doctors have said that she has capacity so despite how you feel, it's her choice not to go into hospital.
I know you want to do what you think is best for her, but she sees you as being controlling.
Also, if she can wash her own hair, she an wash herself. Carers should encourage her to do this rather than do it for her.