Cockroach Cafe - Autumn

[rookiemere]

A new thread but the same themes, for those of us going through the ongoing challenges of supporting elderly DPs and relatives.
No judgement just support and virtual gins or tea on tap depending on your preferences.

Thank you, that's really helpful. It almost feels like she is gaslighting us, and insisting we must have misunderstood or misremembered but we were all there! I think her capacity is limited, personally, but she hasn't had a full, formal capacity assessment but if she continues to refuse I think we will try and insist.

Luckily everyone involved has agreed none of us will help her self-discharge. She will have to agree to the help in order to go home. She's so stubborn though, I don't know how long she can hold out for.

Unfortunately we found that the inability to retain medical information or remember decisions wasn't considered a lack of capacity as she was deemed to understand at the moment she made the decision.

IME presence or lack of capacity is recognised by HCPs depending on what is convenient to them.

Sadly I think you're right!

I found this summary (on the Mind website) which I think summarises it usefully:

Before someone can make a decision for you, they need to have a reasonable belief that you no longer have the capacity to make that decision yourself. This means asking questions like:

• Do you have a general understanding of what decisions need to be made?
• Do you have a general understanding of the consequences of the decision?
• Do you show this general understanding in the way you behave and make decisions?

It's the last hurdle that I think is the most difficult to clear. We are all allowed to make bad decisions; but in this case, does your ER show a "Clear understanding" of the consequences of her decision to refuse the hospital bed? I'd argue that "don't want it!" (shades of toddlerhood!) isn't showing any understanding of the situation and depending on circumstance, "don't need it!" might not either.

Full sympathies @Headstandwe are at a similar place but we don’t have all opinions aligned.
As of yesterday Mil can no longer move - she’s in a lot of pain, it takes two people to carry her to the commode. Mil does not want to move to a home - sil is still facilitating this and is demanding that the other siblings help with the overnight stay - still will not insist with mil that she must now move to a home. It’s all happening quite quickly but sil still insists it might be temporary. Sil is breaking but she still won’t give in to telling her mum what this is costing those around her - especially herself. She’s blaming her siblings for not helping. Dh is calling around care homes this morning as the situation is likely to reach crisis very soon. As @GnomeDePlume mentioned earlier moving her manually when she is unable to move herself and while she is in pain is not safe, with two people it might be easier but that’s just not going to be practically possible. What a mess.😩

@glasswings , it depends on your family relationships and how brave you're feeling, but I'd be v tempted to tell SIL that if other care arrangements aren't arranged asap (today?!) then you'll be calling the duty SW on the CoE team.

You've got an elderly woman in considerable pain whose care has slipped to the point where basic toileting needs can no longer be met.

What's SIL going to do as long if all hold firm? physically drag your MIL, whimpering with pain, to the commode? Leave her in her own mess? Both of those are safeguarding issues.

God, I sound like a cold, bossy cow and I know it's much easier for an outsider to say these things! But someone with non-familial authority needs to lay down the law, for the sake of the vulnerable older person in the middle of this.

What about an emergency visit from the GP, so they can have some professional input? will the surgery do that?

@Eclipsingthe social worker or a gp might have the conversation. Trust has broken down and I think sil just thinks her siblings are not pulling their weight and if they did they’d all middle through- I think any communication from her siblings is met with suspicion that they are saying these things because they just don’t want to provide the same level of care sil expects them to. It’s so hard to communicate with her as she explodes and it’s not that dh is fearful of the explosion- it’s just that it never helps, she never shifts her position, she throws around accusations and harsh words and then retreats and the pattern keeps getting repeated - there is no compromise.

I'm increasingly realising that the actual issues causing me stress, worry and exhaustion are not really Mum's dementia and care needs but Brother's attitude towards this and the insistence from HCP/wider family etc that she has capacity and so no one should try to interfere with her decisions, however unwise.

As I've mentioned/ranted about on here before, Brother insists she should be cared for by family/friends only and of course she agrees. She already needs more help than I think is feasible without some sort of paid help (particularly because she is scared to be left alone at night ever). So she is currently not receiving the care she really needs and not in suitable accommodation. Their view is that she has the right to make this decision and any shortfall in her care is because other people won't do more. I have been trying to encourage her to assign LPA for a long time now, but Brother's not thought it necessary so it's not been done. He has now decided it must be done and must be him. But has clearly done no research to know what's involved (he wanted me to tell him what to do and get him the forms, as he is too busy for all that). I've tried to point out that if he is too busy to fill in the forms he won't manage to do the job properly, but what do I know? The fact that so far every vaguely admin task he has taken on for Mum has been done badly or left so long that someone else has to do it is apparently irrelevant.
It's very obvious that sooner or later there will either be a big crisis or a series of small crises that become too much for Brother and I will be expected to sort everything out. Which will probably mean having to find care at short notice, with depleted savings and potentially selling a house that's been deteriorating for years. All without actually having LPA as Brother will have it and by then DM will not have capacity to change it. (I know joint LPA is possible, but for lots of reasons I won't/can't do that).

I know that looking for and managing proper care is not easy, but if I could deal with it in a sensible way now it would be so much less stressful for me and better for Mum too.

@glasswings - exactly - an outsider in a position of authority won't have qualms about saying whatever's necessary.

@bigdogpaws - sympathies, that sounds so stressful, how can you plan when you're not given the tools to do so?!

That sounds awful for all concerned. My brother reacts in a similar way (although he has always had a tendency to expect to be able to dictate what happens and expect everyone around to kill themselves to facilitate it- he did the same with demanding that family provide him with childcare). I agree that it's pointless trying to reason with someone so entrenched. In your situation I think involving a social worker or similar sooner rather than later would be sensible- perhaps they would be able to make your SIL see that her well intentioned efforts are no longer the best thing for your MIL.

You're right. But Brother's view is that there is no need for anyone to plan. My options, as he sees it, are

1. We all pitch in together to care for Mum for the rest of her life. This will 'just' require the 2 of us to each stay with her half of the year (either in blocks or a few days a week each) and everything will be OK. Some helpful friends and family will be sure to want to help too. This is clearly the best thing. We'll be able to keep working etc and any tricky care needs can be sorted out between us when they arrive- Mum's almost certain to have that special sort of dementia that doesn't lead to incontinence/serious mobility issues/feeding problems/personality changes/not recognising family etc; or
2. Be a selfish cow and leave him to do everything, even though I no longer have small children and am self employed so obviously am in a far better position to stay with Mum than he is. This shows I don't care about Mum and want him and his family to suffer so that I can be lazy. If I do this I can only see or speak to Mum when he decides I should (but the official line will be that I never bother contacting her). No planning needed- he will just have to do everything so I have no right to even ask what's happening.

The problem is that anyone with any experience of dementia (or interesting in finding out about it) would agree that she WILL need more care than we can sensibly provide. Personally, I think we reached that point when she became afraid to be along during the hours of darkness. Brother may be willing to take that on, but at some point she will need more than he can provide. Experience tells me that at that point Brother's reaction will be 'I looked after her for all this time, it's your turn to sort this out!' Which of course I can't be forced to do, but someone will have to and as soon as it's not being done his way, Brother will declare himself out (especially if he can see that the house/saving etc will be spent on care).

Social workers will have seen it all before. The martyring relative making unreasonable/impossible demands of others is a frequent occurrence.

Actually the demanding relative does even need to be a martyr. My brother just demanded while he was doing stuff it wasn't anything that required him shifting from his sofa but I was expected to clean, garden, do all appointments medical and otherwise, visit twice a day 365 days a year (I'm an hour away) etc.

This is pretty much how things began with Brother. He lives a few mins from Mum and always liked to use her place as a bolt hole when he wanted some time of parenting/adulting so at first he was only too happy to stay over with her once a week. Meanwhile I did all her shopping, medical appointments, household admin, cleaning etc. When she first started to have crises Brother was always first to go round and make her a cup of tea but would leave 'for a rest' as soon as I arrived to try to sort out whatever she was worried about. It's only since I've said I can't do any more and we need paid care for Mum that he has started to do anything that's really inconvenient to him. He wanted me to take over doing everything once this became difficult for him, but as I keep reiterating that I can't and we need a proper care plan he has doubled down and things have turned quite nasty.