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.

Nope. Don’t need it and am more than comfortable.

Has she completed a DNR form (available through NHS/GP surgery)?

Do not attempt cardiopulmonary resuscitation (DNACPR) decisions - NHS (www.nhs.uk)

And also:
Advance decision (living will) - NHS (www.nhs.uk)

And neither my uncle, my cousins or her friends who are all on the same page for example - none of them would benefit.

which is precisely why we had a family and friends conference this weekend so I could sanity check my logic just in case I was subconsciously being affected.

No she has not because she she went into hospital this was not an issue. I have power of attorney so will be completing one for her.

Holders of Power of Attorney must always act in the donor’s best interest. If you have medical staff, social workers and other professionals say that your mother needs to be in full time care and you disregard those opinions, this could be a ground for objection. If anyone believes that an attorney is not acting in the best interests of the donor or potentially abusing their position and they wish to challenge the attorney on their appointment or on specific actions that they have taken then they can report this to the Office of Public Guardian, which oversees these roles.

The Office of Public Guardian can then choose to remove the attorney from the LPA if they have sufficient evidence to do so. In some serious cases, the Court of Protectionn_ can cancel an LPA or take action against the attorney.
You can put forward your mother's opinions and ask for a DNR plus ask that she is not given vaccines and active treatment of illnesses but to leave her at home in danger would not be allowed. You can move in with her but - as I found when my father died and my mum who had dementia was waiting for a care home place - that means literally never leaving her unattended, sleeping with the bedroom door open in case she got up in the night, dealing with toiletting accidents etc. it's not a choice for the feint hearted.

The doctors complete dnr forms, not poa. Maybe a best interest meeting should be set up which would give you the opportunity to let them know mums wishes then a plan and level of care and community support can be arranged.

They have to be counter-signed by medical professionals so this might not be as straighforward as it seems. If you're completing it on her behalf you may be assessed too (not for capacity but for best interests).

And this is precisely my frustration - best interests.

i know what social services and doctors will say because, as have people said on this thread, once people go into care they can get a new lease on life.

i know my mother
her friends know her
my not vested interest family know her
a member of the bloody hospital board of directors who knows her

Not one agree that care home and keeping her alive is in her best interests having known the woman throughout her life

however they can decide for her

I don’t want her to die - she’s my mum.

but I’m realistic.

she’s 80
has severe aortic stenosis
is crippled with arthritis
all she wants is to see her garden and die looking at it

if she goes into a home the last can’t happen

She might be a difficult ornery old cow but she is my mum and I’ll do anything to let her die where she wants to

Care homes do not keep people alive, they may get a tempirary new lease of life because they are being looked after, are offered food and drinks that they may not be getting at home but everyone dies eventually. What plan is there at home if she becomes unwell, stops eating and drinking, becomes distressed and agitated, that's what a best interest meeting could resolve.

If you have registered the LPA and mum has an MCA stating she lacks capacity to make a specific decision, then YOU as her attorney make the Best Interests decision. That’s the whole point of having them. You know your mum, her past wishes etc. You should also be using the Least Restrictive option. Which in this case is returning home with a care package.
The OPG are not going to get involved if the ward say they think mum should be in a care home. They would agree on this plan.
If mum were to arrive at a care home and say she wanted to go home a Deprivation of Liberty Safeguard would be raised and the assessing worker would query why mum didn’t go home, then direct you to arrange care at home. That could end with the OPG getting involved!
You’re doing great advocating for your mum. Keep going.

A home care package doesn't "keep her alive". They will attend her basic needs.

As much as you all say you and your mum want this, she can't just be left to rot at home. What a DNR et al will achieve is, if she becomes ill, the terms of it will kick in.

A home care package plus the DNR should accomplish her comfort at home and respect her wishes AND take the pressure off you a little.

You will have to jump through several safeguarding hoops but that's the nature of the beast. Until assisted dying is legalised in this country it HAS to be this way to rule out abuse and coercion.

In your first post you say '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.' Then you say you can move back in with her. That could be for years. Have you really given thought to how that would impact your life now and in the future to be 350 miles away for your work, friends, children, hobbies or whatever you have in your life now.

Sometimes when parents get old there is no good option. It is about the least worst option.

I have no kids and my husband is retired. Moving in with my mom is not he end of the world although not the first choice.

Haven't had the chance to read the full thread but read your responses OP.

You are in a fortunate position that she has given you LPA, for the very reason that you would be able to advocate for her wishes.

It is unusual to go straight from a no care situation ( and driving) to a care home without trialling care at home ( short of a catastrophic change in physical health). Hopefully if she hasn't already had a therapist review this can now be undertaken to maximise her safety at home. Encourage her to cooperate with this staff will be trying to support her staying at home.

Just to clear up a few misunderstandings, it is very likely they have already had a resuscitation conversation ( whether mum recalls this or not) it would be worth asking if this has already been recorded, ( you have POA so would be entitled to being involved in the discussion)

Care homes do not force feed patients - many times carers recognise before family when patients are approaching end of life, that's not to say patients are not supported to eat ... but this is not the same as force feeding, I think it might help you to visit a couple of homes both where mum is and where you are ( look at cost and what's on offer) having a back up plan b is always useful.

I work in healthcare and love my dm to bits but 24 hour care for someone with dementia is not an easy task.

I was told that a care home would still treat infections and viruses even if a DNR was in place as it only covered heart attacks.

She sounds just like my mum! My mum had 2 strokes then discharged herself from hospital & then broke her hip! Hospital said she had memory issues but it was the stress of being in hospital. A home was suggested as she wouldn’t cope at home. She also refused carers & a fall alarm.

Fast forward 4 years & she’s still in her home with carers 4 times per day. She sleeps in the front room on her bed(which she sits on to watch tv on in the day) she has a commode 2 small steps away.

I don’t know what the answer is for you op but I would feel the same. I just couldn’t force her into a home. Although my mum didn’t seem to fail any capacity test as I don’t think they did one at the hospital. She did seem very confused in hospital but isn’t now.

A Treatment escalation plan can cover many things, not just resus.

Is resus wanted ( or appropriate), will there be admission to hospital ( and are they suitable for ITU) on what grounds ( reversible infection/ fracture /symptom control?) or is care preferred at home with management of symptoms.

Your mums current condition and known wishes will be taken into consideration , however the TEP is a guide as it can't cover all possibilities and situations.

The care home would be guided by the plan.

OP can you ask the hospital about a ReSPECT form? This would detail the intervention if she were to become ill, we had similar with my grandparent who had dementia and at the end just let an infection take him.

I know you are sure you don't want a care/nursing home but I just wanted to reassure you that if it comes to that, they don't force people to eat and drink, they can be really lovely places where people can be cared for and looked after and be comfortable. You'll know if/when it's the right time.

A gp would visit shortly after admission to a carehome, read through the notes and make a plan of care. The hospital may issue a dnr before she leaves which can be used in the community or the gp can do one. It's not for heart attacks, the staff wouldn't know if a resident had a heart attack unless the paramedics or doctors were called and tests were done. The gp and hospital, resident and poa can agree on the appropriate reasons for any further admissions, sometimes its for broken bones only, anything else can be managed at home or in a carehome. Dnacpr is do not attempt cpr in the event someone's heart stops, it doesn't mean they don't see a doctor if they deteriorate or approach the end of their natural life. There's no harm in treating a nasty infection if it makes someone more comfortable but there is often a limit to how many courses are of benefit. Not many viruses need treatment.

What I’m finding hard is we thou go to we had it covered with the LPA and everyone knowing her wishes (not just me) but it seems it can be ignored!

You must see why professionals are hesitant to just accept it at face value when relatives say a person wants to be left to die, especially ones who stand to inherit. I'm a big believer in voluntary euthansia and that we have the right to die how we like, but even I can see why it needs to be treated very cautiously when the patient doesn't have capacity.

What I’m also finding hard is two weeks ago it was my choice to get her sent to hospital. If I’d have known this was going to happen - my decision would have been different.

Even when more people who don’t stand to inherit agree as well?