Cockroach cafe - summer

[GnomeDePlume]

A new thread.

This is a place where anyone dealing with elderly parents/relatives/friends can rant, vent, scream into the void.

There is no judgement just understanding, support and good advice.

I think the problem is often connected to the fact that some older folk get very good at confabulations and spinning yarns. They sound believable and if are also personable, the professional assessing them will think, what a nice person! They were able to tell me all about xyz, and understand ABC!

(My mother can be very personable to strangers. It's only to family members that she shows the sharp side of her tongue. I've had a lifetime of people telling me "but your mother's lovely!" when she's been foul to me).

Anyway, these professionals don't realise that half of what they've just been told us total fabrication, and within 5 minutes of the assessment being complete, the older person has forgotten or changed their mind. Too late - capacity has been assessed and found to be intact ----

The lack of system or process leaves elderly people hugely vulnerable.

Left to my DB, DM would never have been diagnosed. If she hadnt been incapacitated by a fall meaning she had to go into a CH they would have stumbled on. At some point DB would have given up. God knows what would have happened to DM.

At least DB means well. I am sure there are plenty of relatives who dont mean well and see the elderly relative as a source of funds.

@Eclipsing this is the problem when formal assessment doesnt take place and you have someone who doesnt understand cognitive decline doing an unofficial assessment.

DB thought that DM not disagreeing with him was evidence of there being no cognitive decline. He was very cross to find out that he wasnt going to be allowed to help DM with the assessment.

@GnomeDePlume That sounds so familiar. My B strongly resisted getting Mum assessed (even when she was actually asking me to arrange it because she was concerned herself). He had an explanation for every symptom and even when she was hallucinating he tried to claim she was just having nightmares and being worried by them for a while after she was awake. He asked to stay with her for the first part of her assessment and had to be reminded several times that they needed Mum to answer, not him! They did her assessment over a number of visits and after the first said there were certain sections where they needed to be alone with Mum 'as standard'. I did wonder if this was true or just to stop him chipping in.

My experience, even after a very clear diagnosis, provided what Mum says she wants doesn't have a risk of imminent serious injury, doesn't involve intervention from them, and there's someone in the family willing to facilitate it their mantra is 'It's your Mum's decision to make'. For many months now Mum has been sleeping on B's sofa and keeping her clothes/medication etc in a small suitcase. This is because she does not want to be alone at night or have any paid care. During the week she is alone all day whilst B and his partner are at work and at the weekends often alone for a lot of the time whilst they take their child out/run errands/socialise etc (all perfectly normal things obviously). They claim that she can't possibly get dressed and have breakfast etc until after their child has gone to school as it is too disruptive, so she is not able to be ready in time for a the collection service by a day centre I organised. I live several hours away but go over about once a week to take her to medical appointments, have a shower, and collect clean clothes etc. Other than this and an very occasional visit from extended family she has no social interaction and can't even really entertain herself as she can't read/work the TV/operate a smart speaker etc. I have suggested residential care, as have professionals now. B is adamant that their plan is to move in with her and everything will be better. I don't think it will, and this has apparently been the plan for a very long time with no move in that direction. Mum says she just wants to be in her own home with family to look after her so she is happy with Bs plan. Apparently this is enough to count as her having made a decision.

Assessment of capacity is a difficult and confusing subject; it's widely (and wildly) misunderstood by many people.

One of the issues, to my mind, is that contrary to what many people think, assessment of rarely demonstrates an "all or nothing" situation. Capacity should be assessed for each situation individually; only in extreme circumstances will people be deemed to have lost capacity altogether. Even those who have severe cognitive decline may still have legal capacity to make some decisions, even if it's only what they want to eat or whether they'd like to see a person!

Because it's situation-specific, capacity can be assessed by a variety of people. Eg a solicitor should assess capacity when dealing with requests for legal matters, not least because the assessor needs to be able to assess the person's understanding of the situation, so needs a clear understanding of it themselves.

In a general setting I think that carers who spend a lot of time with the person (hours per day, not 15 min slots!) are probably well placed to know that person's cognitive state but a professional carer may well be more honest than a family member as there is less over- or underlying emotion (and possibly financial interest) to their judgement.

The no.1 rule of assessing capacity is that a person should be presumed to have capacity unless it can be shown otherwise. Add to that the complexities of assessing someone for umpteen different possible situations, and the ability of people to hide and lie about their problems, and you can see the difficulties.

--- added to all that the fact that we are all legally allowed to make unwise decisions!

The is also our fear . She has got through life by manipulation and is a master at that I hope ( when the ' official ' investigation ) takes place they see through her and concentrate on cold facts .

Fuck. Fuck. FUCK.

So, my mum makes a decision about moving to near me and Mr Monkey. She says in an email ‘please be happy for me’ on Wednesday. No reply from my Twat Brothers, which means they are plotting something to undermine her. And me.

I arrive at my Mum’s this morning after a bus journey, a tram journey, another bus journey and half a mile down a country lane in the rain as taking her for a medical appointment this afternoon.

I get there, let myself in and Golden Boy is on a video call saying there are other options to her moving near us.

What other Fucking options? Of course, the options aren’t disclosed (but clearly known by other sibling) and all will be revealed in a ‘family conference’ later this month. It’s ’in person’ I’ve pointed out that I’m away for two weeks in September and away in early October. I have no doubt they will engineer it so the dates fit with when I’m away. They are absolutely fucking vile.

My mum is an adult. They are bullying her.

i am fucking livid. She is incredibly quiet because she’s really upset.

@ManchesterMonkey What arseholes your brothers are. It sounds like your Mum is completely mentally able and has made a perfectly sensible decision that they want to push her to change. The idea of a 'family conference' to discuss it would enrage me. I can only assume they think if they are there with her in person (especially if you can't be there) they will be able to bully her in to complying with what they want.

I do wonder whether they are going to suggest either Avoidant Functioning Alcoholic Brother moving in with her, or her moving in with him (and either selling her house and sharing proceeds with them or keeping it and letting it out etc). I hope I am wrong, and I am probably projecting based on my experience of my own arsehole brother, but they must have some sort of agenda and it's clearly not your Mum's welfare.
Do you think you and your mum could set the ball rolling for her move before they can arrange their 'conference'. Would she be willing to refuse to take part (but that could be tricky, she's hardly going to turn away her sons if they arrive at her door) or could you prime her if you can't be there to listen and tell them she will take a few weeks to think about it (by which time she can speak to you and you can both tell them where to go).

@bigdogpaws thank you so much. Yep, they’re self interested arseholes. And bullies. My mum is very stoic, but very upset.

i wonder whether the plan is to convert the garage at Avoidant’s house into a granny flat. Golden Boy owns that house and when the idea was suggested earlier in the year he actually said: great, that will put value on the house.

He has always put money above all.

They will absolutely try to bully her.

I’ve got viewings arranged for flats. I’m forging ahead.

@ManchesterMonkey I know you know this but if GBs plan is to build a Grannie flat please try to get a legal agreement in place first. I am still dealing with the shit show of my sibling building an Annex for my parents and not getting a legal agreement in place.

My DDad was dying and I didn’t want to upset him so I didn’t have the argument I should have had. My DDad was desperate to get DM moved in somewhere she would be looked after before he died. I know he died happy but my God I’ve raged at him for leaving me without any legal documents etc. when my sibling realised they hadn’t thought it through and I was expected to sort it out.

I am so, so sorry @ManchesterMonkey - I well remember you from Stately Homes and the prolonged and wretched torment you and Mr. Monkey had to endure at the claws of The Hag. I so hoped that the future would hold nothing but joy for you after she was gone.

I hope you can get the flat well rolling and into the goal-mouth before any "family conference" (why haven't they been conferring as a family before now?! I think we all know why) is staged - for a well-rehearsed script on their part it will no doubt be. Would mum believe that they don't have her best interests at heart? "Family conference". That absolutely boils my p~ss. Wishing you all the best. x

Actually, I wish you ALL the best. I am a long-time lurker (sorry), but wanted to send support to Monkey. Just think of me as the Tanqueray Fairy - I'll pop a fresh bottle on the counter and slink quietly away (with or without my sack o' teeth) - I think you're all absolutely fantastic. xx

@Eclipsing I understand how the law works (or doesnt IMO) around capacity assessment. The problem is the reality of the situation.

It is very easy for someone to decide an individual does/doesnt have capacity according to what suits their own agenda.

A less than scrupulous solicitor isnt going to turn down a fee paying customer especially if they can be talked into a decision which will lead to further work.

A carer with a long client list to get through doesnt have the time to gently persuade a client to wash/change clothes. Far easier to mark them down as 'declined care' and move on.

@gnomedeplume, I'm sorry, I wasn't trying to imply that you didn't know about capacity assessments and I apologise if it came across that way.

I suspect many people in our situation understand the issues around capacity all too well!

I was just trying to explain some of the problems with assessing capacity, as I see them. I'm not sure how a better system could be devised but can't help but feel that things could be done better. Too many elderly folk who are struggling (and trying to hide their struggles) are enabled by the law to refuse the help they need, way past the point at which they are safe, and truly capacitous, to do so.

@Eclipsing not at all!

Capacity assessment is yet another area in elderly care which hasnt caught up with the number of people who are living on into a very frail and vulnerable old age.

At the same time many elderly people have assets (1st generation home owners) which could/should be used to pay for care. However they arent familiar or comfortable with this idea. This didnt happen for their parents/grandparents. Family members may be seeing those assets getting consumed and are frightened that the family wealth they had hoped to benefit from is disappearing.

People are being deemed to have capacity to make decisions which would be tricky enough in their younger days. In frail and vulnerable old age they can struggle.

When I think about my MILs capacity, I sometimes wonder if it’s just because she is making decisions I don’t agree with! I hope I’m looking at the bigger picture and trying to future proof instead of solving yesterday’s problems but I do wonder at times. I’d absolutely love it if she was safe in a retirement flat or CH, not cutting about in a rickety old house with only an upstairs toilet and a kitchen that was last updated in the 70s sometime.
But she wouldn’t, she has 60 years of memories in that house, bringing up her family and it’s where my DFIL and BIL died so recently. It’s also stuffed to the gunnels with old paperwork, mixed in with new so moving would be an absolute nightmare for her. She is more than happy to leave that to me when she goes, she’s said so! And I understand it, she was of a generation where her husband dealt with the ‘important ‘ stuff and then BIL took it over when FIL died and I suppose I have to some extent now he’s gone. But because I am not there all the time like he was, some important post just gets shuffled into the tottering piles and missed. Not because she really can’t understand it I don’t think, but she chooses to ignore things she’s not interested in. Maybe she is showing greater capacity than me because in her case someone always swoops in and sorts out the mess she makes with v little consequence to her.
It’s not a decision I would like to be in a position to make deciding on another’s capacity, although I obviously understand for those who do there is training, experience, expertise and precedent.
I am so grateful to this board, for making me feel less alone, although I hate that so many of us are scrabbling about in the cracks our elderly relatives have fallen through.
Love and light ( and cocktails or mocktails) to us all!❤️

The problem is also that if they are deemed not to have capacity, who makes the decisions. LPAs of course but as many of us have seen holding LPA doesn't necessarily make someone act in the best interests especially if there is inheritance at stake. And it's a huge responsibility, it's one thing using it to do shopping and pay bills for them but house moves etc are an enormous burden even with LPA.

I understand what the legal position is, and would completely agree that an elderly person who has no mental impairment should be completely free to make an unwise decision (subject to the usual rules that apply to everyone about being within the law and not hurting others etc) provided that they accept the consequences of that. I had a great aunt who remained mentally sharp until her death in her late 90s and insisted on staying in her old house with terrifying stone stairs to the door etc and going out in all weathers on her own. Her children were worried that she would fall and tried to persuade her to at least have the house adapted and not go out when the weather made the steps slippery. She said she would rather risk injury than have to stay indoors and liked her house as it was so accepted that it was dangerous. Many may say this was a very unwise decision, but she made it with a full understanding of the facts and potential consequences.
I think this is very different from someone with a disease that causes reduced cognitive ability, who shows lots of other signs that their cognitive abilities are significantly reduced, making a decision that is objectively unwise eg. refusing care/refusing adaptations to the home to prevent falls etc. In this case, I don't think them saying words to the effect of 'Yes, I know there could be negative consequences but have decided on this course of action' has the same weight as someone without dementia etc.
I know we probably all feel like this, and we know there have to be safeguards in place but I really feel the current process lets down the very people it's supposed to be protecting

With mum she insisted that she was managing fine at home and doing the housework and gardening (despite it being extremely obvious she wasn't) and having and active social life (despite some of the activities she claimed attending weekly having stopped running at least 2 years previously/from when she lived elsewhere 20 years before), that she managed her own finances on her computer (she'd never done online banking in her life and had forgotten the local branch had closed years before). Her claim that she didn't have carers was believed by the social worker despite her twice daily carers being arranged via the Local Authority.
The social worker was a bit non plussed when I pointed all this out, not having been notified of the assessment in advance, but insisted she was doing "very well".

My mother enjoys gardening although she can't manage it very well these days. But for years she has been happy to intermittently employ a gardener to help.

Yet she is absolutely livid at the suggestion that she might need help in the house.

It makes no sense to me. I mean, you could find possible excuses, rationalisations etc but help is help.

My mum never enjoyed gardening, just telling dad what the next changes she wanted were. Dad did everything in the garden. You would never have known that from talking to mum after he died. Meanwhile the garden was rapidly becoming a re-wilding site.

@countrygirl99 that is exactly the sort of thing I mean. It suited the SW's agenda, budget, work load to say your DM was doing very well.

It suited my DM's CH to say my DM was also fine. It meant they didnt have to deal with DB if they didnt feel like it. It was only when DM's behaviour meant that she needed to be kept secure that a capacity assessment was quickly arranged.

The financial side of things is going to get more tricky. The baby boom generation are retiring or have retired. Many will have private pension pots and own homes. This may seem like lots of money. Except it has to fund a potentially long retirement. Many will never have had to be responsible for so much money.

The unscrupulous will see opportunities. I think this happened to my DM. She rewrote her will a few years ago. It is far more complicated than the value of her estate justified. I am sure the solicitor was absolutely thrilled to sell her the idea of a trust. He will have known that will be bringing repeat business as DBs and I are stuck unpicking the mess.

That trust business is terrible. There’s a lot of them about, totally unsuitable for the situation, generally.

We had a Solicitor trying to sell us one when we updated our wills. Told him where to go and then a friend who is a retired solicitor put together what we actually wanted for a bottle of whisky and some nice wine instead of the £2.5k the grifter was trying to charge.

I understand that my mother may have placed my brother's share of the estate in trust. But that is because he's not likely to ever be able to work, plus he's fallen victim to financial scammers more than once. Trusts have their use.