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.

Look into care homes near you.

There is no reason she cannot move if she is self paying since you mention selling house

Of course she prefers to fall and die at home but that s not realistic is it?
Look at care homes near you so you can visit regularly
If she is medically fit drive and pick her up or pay a medical transport if needed

A care package is 15 - 30 minutes max four times a day.
will she be safe with that?

she could go into a care home near to you

It might be a good idea to speak with a social worker, or someone from adult social care in her local authority, ask for a care needs assessment and discuss direct payments or a personal health budget? You could then arrange her to have care in her own home?

I'm surprised they are leaning towards a care home usually they won't until they have too can she not sell up and buy local to you?

Capacity fluctuates/changes and a new assessment needs to be done for each care decision. Make sure the social worker knows what they're doing/is experienced wd be my advice. It shouldn't be about passing or failing a test - ur mum should be given loads of support to grasp what is going on in this situation. Good luck.

Why do you think she can’t go to a care home near you?

Yes, she would be safe with that. The only issue she has is not admitting when she's not well - we can tell when she's ailing before she'll admit it. I can always go and visit at the first sign she is ill.

She's not shown any sign of any behaviour at home that would make her unsafe.

She won't want to go into a care home at all and would definitely not want to go into one in Scotland

Is your DM in Scotland? As well as the house, does she have savings? Are her savings less than £23k?
If your DM is asset rich but cash poor, you may be able to rent out her house to help pay towards her care. But it would depend on her assets, pensionable income and weekly cost care home.
check out Care Information Scotland.
In my experience, the SW team actively try to exhaust all routes of keeping the elderly person at home before they decide on the care home route.
My DM lived in one area but she was placed in a care home in my council area.

Can she go in the sheltered housing where your uncle lives and have a care package there?
Can she go into sheltered housing near you?

If she had a flat in a sheltered block with a “warden” etc she can still have carers and lots of those places have guest rooms you can rent when you visit if she stays in her town rather than moves to yours.

Oops cross posted.
She’s not in Scotland

Care worker here

From what you have said there is no reason for her to go into a home atm.

I would look for a support package of carers who could come in 4 times a day for up to an hr. A team of private carers coming in would probably give her the most consistent care.

Get fall alarm and monitors sorted. So if she falls someone knows. There are some that work on GPS so can also alert were she to go outside of a certain area or where to fall outside.

Get her consent for doorbell cameras etc too.

I'd also see if someone local to her was prepared to be an advocate for her. To go to doctors appointments with her and be around if she needs help

1. a DNR is just that - do not resuscitate. My stepfather has one, but would still be given meds if needed. If he had a heart attack he wouldn't be resuscitated.
2. If she did need residential care, she could go into one near where you live. Even if she didn't move nearby, would it really be so difficult to visit her every couple of months and pay for a night in a Travelodge?
3. The fact that she cannot recognise that she is unsafe in her home and needs residential care is a clear sign of not having capacity- shes not making a reasonable judgement. She should have a MDT needs assessment, and a professional will carry out a capacity assessment. My MIL had capacity in some areas but not in others because she had no insight into just how risky it was for her to live alone.

Really tricky. I've been in your shoes and moved my Dad to a care home near me but which was a long way away from where he lived and therefore all his friends. It will put a lot of pressure on you as you might be the only familiar face for your mother. If I had the option of leaving Dad at home for longer I would have grabbed it.

If her house needs to be sold, move her closer to you. We did this with my Aunt, we moved her from the South Coast to East Anglia to be closer to us.

Please try to resist the urge to make all the plans all at once. Well done for getting the LPA in place, that’s such a head start - is it health and wellbeing, finances or both?

Capacity is decision specific (discharge destination is different to DNR for example) and every effort must be made to support decision making - eg assessment at your mum’s best time of day. Capacity fluctuates, so she may not be well enough to make long term, but it could be that after some time at home (with a package of care) or in a short term reablement placement in a care home, she’s doing much better and things need reassessed. UTIs have a huge impact on someone’s mental wellbeing and recovery takes time. Even if someone lacks capacity, any decisions should be in line with what someone’s capacitated decision would have been, ie, a “best interests” meeting is held which must consider risk taking behaviour, personality etc.

Not pressing the alarm when she fell should be covered in a capacity assessment: can she weigh up the consequences, can she understand that wearing and using it is a requirement if she intends to live independently

Essentially, don’t panic. There’s a formal assessment to be done, and if your mum lacks capacity, a best interests meeting is held which you should be an integral part of - key then is to ask for a review date of any decisions, sometimes the financial aspect is leverage for this.

Just to add - a principle of the mental capacity act is that any decision must be the least restrictive alternative. That might be a useful question for the discharge coordinator/OTs/social work team.

Social worker here -firstly make sure capacity assessment is done by social worker as they will consider bedt interest and any previous wishes made by your mother. If they push for a care home and you don't agree then request a court of protection referral. The court will then decide based evidence which option is best.
If she has never had a care package I think you have grounds to request that she us first tried at home with care.
Just note hospital's can more or less do what yhe want when it comes to discharging her. They can even put her in a care home for 28 days funded by them (d2a pathway). Careful.of that option as she will never get home, simply get use to being in a care home.

I'm a community nurse, my understanding is that you don't have sell any property until they die?

In your shoes I would want a care home for peace of mind, lots of patients are very reluctant to go into residential/nursing homes but actually find a new lease of life when they do 🤷‍♀️

Otherwise yes to moving her closer to you.

I’d ask for capacity test to be redone in a week
she’s had uti and major illnesses any of these could briefly affect her mental capacity

she your mum and you love her and sometimes we can’t see the decline as our judgment is clouded by emotion

it a big ask but look from a unemotional practical pair of eyes and think is this the best for her long term

if she is declining change is easier to manage before it gets to crisis point

good luck

Your house is only taken into consideration for fees when you go into care. If you are a couple and one of you goes into care and the other one is still living in the house, the house is not taken into consideration. If you both go into care, your whole house is taken into consideration.

Agreed re the above comments regarding the possibility of someone going in and out of capacity. Medication and UTIs or things like diabetes can often affect things. You can only make decisions for your mother using the Health and Welfare LPA when she doesn't have capacity.

DGM was the same but eventually to keep her safe (which we did for another 5 years by putting her into a care home) we had no choice. We also chose a care home local to us which meant we could visit daily. She isn't asking for help when she needs it and needs someone looking after her.

If you feel that remaining at home with a care package is in her best interests then make this very clear to the social worker and hospital discharge manager and stick to your guns

A care home ought to be the last resort when a care package has failed (unless of course your Mum had stated a preference for a care home which she clearly hasn't)

They usually try carers at home before care home so that's surely the most likely next step?

Most people say they don't want to go into a home! I have one distant relative who actively chose to and it was a very positive experience as she chose it. Sometimes it's necessary. She could go into a home near you or near where she currently lives - where would she get more visitors?

Some homes have a guest room for visitors you can book in advance - my distant relative's one did. Same with assisted living type places. Or a Travelodge nearby is a cheap option if it's not a major tourist destination in peak season!

Highly unlikely social services would agree to fund a care home place if your mum hasn’t tried a package of care first - they usually want to see that has tried and failed before they support care home placement.

If they are suggesting care home first-off, your mum must be completely unsafe to be left unsupervised. Go to the meeting and listen to what they are suggesting, you are probably on the same page.