So, a sudden change in status with middle stage alzheimers mum

[FinallyMovingHouse]

Hi all

I know that you are all the absolute experts on this and I definitely need your help.
Both parents caught the nasty cough going around and both had an expiratory wheeze so were seen by GP. Dad had not been able to sleep, as mum was getting worse during the night and basically wouldn't let him sleep (talking, poking, making tea, asking for tea, etc). Suspect that this led to the lack of recovery or at least didn't help.

Dad (88 and frail with long term heart issues) has a chest infection and now on antibs. Mum (middle stage alzheimers, but always physically stronger) was found to have atrial fibrillation (HR 160), suspected chest infection, UTI and high blood pressure and was therefore admitted that night.
3 days later and she's still in, with HR still 150 odd. She was distressed for the first 36 hours and since then has been vastly happier but making absolutely no sense at all; hallucinating etc, which I might expect with a UTI, but that should be improving (as is her chest) and not getting worse? She seems really happy with the business of everything going on around her, although is having to be supervised all night as she's pulling out all her monitors. My DSis (ex ITU sister) signed a DNR today. We don't get the impression that she's going downhill fast, although obviously still being in AF is not good and runs the risk of clots etc, hence the DNR.
So, back to the other issue.
My dad, who has been adamantly against any intervention, carers etc, has started to talk seriously today about getting her into a care home, as I think that this has demonstrated to him as to how little he was actually coping in reality and also, that mum is really enjoying the hustle and bustle of a clinical environment, now that she's used to it, he's wondering if a care home is a kinder option...she seems happier than when at home. He's now worrying about paying for it though.
They have some savings, own their house and half of the house value would be used (50% is in trust so can't be used as it's his), but he's slightly panicking about having to sell the house now to pay for it. Am I right in thinking that this can be left as a lien on the house and then the council will take the money back once the house is sold at a later date?
My Dsis and I saw a lovely care home about a year ago, but of course, if she stays in the (I assume) end stage of alzheimers, can she go into a 'normal' care home? What is the type I need and do I just need to ring them up to check or is it an advertised thing?

My Dsis and I and dad will meet tomorrow to discuss next steps, so any and all advice and 'things to think about' and plans to make would be most welcome.

Thanks in advance x

@FinallyMovingHouse
No one did an official capacity assessment of my mother before she moved to her care home either. As you say it was blindingly obvious she didn't have the capacity to make decisions beyond 'tea or coffee'. Social Services will do a DoLS (deprivation of liberty safeguarding) assessment after she has moved in but they generally aren't in a rush, in my mother's case she had been there for five years!

As a PP mentioned, all her clothes and other possessions will need to be labelled. I used iron-labels, so much quicker and easier than sewing and they did stay on through the laundry process.

So has a formal capacity assessment occurred and you've been issued with the COP3 confirming that she no longer has capacity? Being an appointee for benefits doesn't confer a decision on capacity, as the DWP use a lower bar for allowing appointeeship.

It may seem "blindingly obvious" to people who support the elderly person day to day, but it is a legal status which is established by a legally defined process, and one which a great deal of significance is attached. So it is essential you start asking questions about capacity and ensure assessment and Best Interest planning is taking place with your voice included.

But capacity is decision specific.

COP3 is a court of protection form. This family have PoA and in my experience a formal capacity assessment won’t be required.

Those involved in process - home staff/ SW/ medical staff etc do their own assessment but it isn’t formal.

I imagine if they think a capacious person is being deposited against their will in care they would raise safeguarding concerns.

EPICF was initially unhappy mostly driven by talking with one of their friends who had no idea of the day to day chaos that was happening or the amount of support required.

We (other PoA and I) offered to arrange a formal assessment for them with a third party but ultimately EPICF decided they didn’t want to do that (think the thought of being told by a professional that things weren’t right was too much).

My fellow PoA snd I both assess capacity in our professional lives and outlined very clearly to EPICF why we didn’t think they had capacity to make the decision. As always in families EPICF will defer to anyone except us even in the areas of our professional expertise.

To the extent that in the past before their own cognitive difficulties they rejected my fellow PoAs legal advice about what they could do with the PoA for a family member with dementia and instead sought their own advice which cost £££. My fellow PoA is a solicitor.

I also politely updated the friend with exactly what was going on behind closed doors and asked them to check before encouraging PoA to oppose stuff we had put in place. I reminded friend that if still unhappy after speaking to me they can invoke safeguarding route and that I regard them as good protective measure for EPICF.

Thanks BeaTwix and roundaboutthehillsareshining. It's amazing as to the level of learning I'm doing about this, having really known very little before this.

My next investigation, once mum is a bit more settled, is to find out the process of what happens once her half of the money runs out and the value of half the house has to be used. Perhaps that's linked to a COP3..who knows, but I'll find it out, as I assume that the local council need to assess officially at some point to make sure that they agree she needs to be in a care home and hence would not then say "take her out" once the money is gone. I can't imagine they would, but who knows.

Poor mum.....this is all just really crap frankly and she's just so anxious and afraid with everything.

Your mum's 'half of the house' will never be used for care fees as long as your dad is living there. When her savings get down to £23k Social Services will take over paying for her care. When she has about 4 months of fee funding left you should contact Adult Social Services and ask for a financial assessment, you as her attorney will fill in the forms, they will visit your mother. It will take around 4 months for them to go through the process so don't leave it to the last moment.

I never encountered a COP3 form during the ten years of arranging my mother's care, both self-funded and LA funded. I mentioned earlier that Social Services will do a DoLS, and at that point they could raise an issue if they thought the care home was not the right place for her. But it may take quite some time for them to do the DoLS.

Oh @FinallyMovingHouse it's so hard. It sounds so like that happened to my dad. He was at the same stage of dementia and I very much recognise the shouting in the night and keeping their spouse awake as the same thing happened to mum. He was very difficult to manage and quite nasty at time which was so not like him.

This is the stage we started having serious talks with mum about residential care. It sometimes takes a crisis like this to bring things into perspective. I hope your mum continues to be settled and calm in care. Dementia is the absolute pits and I wouldn't wish it on my worst enemy.

Thanks so much catofglory. I had missed your info about a DoLS (mildly drowning in acronymns lol).
I've spoken to her just now, after an utterly desperate conversation yesterday. Today's is slightly better...still tears but not constant terrified sobbing thankfully. My dad was considering taking her out after lying and thinking all night, but has stepped back from the edge thanks to conversations with my Dsis and I this morning. He does realise that it won't work in reality but is asking himself "how he can treat her like this after 65 years of marriage". We need to keep reminding him of last week when he couldn't cope after one night of her being like this and I was there to shoulder it with him. So tough and everyone is right in that I wouldn't wish this on my worst enemy. Love to all going through this xxxx

It must be really overwhelming, it is a big decision.

Bear in mind that hospital is a terrible place for people with dementia, it is noisy confusing and intimidating. And there is no one there to reassure and help you because the staff are all too busy. So it is not surprising your mum is tearful and scared when she sees family.

She will honestly feel much better in a care home, it is a completely different vibe, more homely, music or TV playing, carers who understand how to help her and have the time to do so. So she should be more settled and happier there.

My mother broke her hip and she was very withdrawn and scared while in the hospital, the staff were hopeless in terms of dealing with her dementia (I get it, they are too busy). But once she was back at her care home where they understood her, she was a different person.