Cockroach Cafe - Autumn

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.

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.

Same for my mil . We have noticed a sharp decline in her cognitive ability ( she is 90 ) and lives alone .
She has recently had two spells in hospital after having hallucinatory episodes and found to have raging infections .
Whilst in hospital has threatened to kill herself if not allowed home .
After 7/10 days due for release and agrees to a care package for a month .
However once home , has on both occasions refused that care and not allowing carers .
Deemed as having cognitive ability , so carers are cancelled as per her wishes .
Rinse and repeat.

Does the bad daughter bench come with pillows to scream into?
AAAAAAAAAARRRRRGH!

I'm back to worrying about my mum, she's loosing her ability to navigate well known places.
She's lived near a small shopping centre for 40+ years, since I was a baby.
We went there today, she needed to go to the post office to pay her bills, I left her to grab a trolley and sent her off to the post office.
Somewhere she took a wrong turn and I thought I'd lost her, she did turn up eventually (not without me wondering if they still put calls out for lost children?)

The shopping centre hasn't been deeply refurbished for 10years ( shops come and go, but the escalators don't move) Tesco adopted the post office years and years ago.

She also seems to be loosing the concept of time, she called me at 7.15 wondering when I was coming to see her. We had arranged 9ish after I'd dropped off DH somewhere.

I feel like a shit daughter, but I don't know what to do? Can I speak to her GP? Is that a thing?

To be honest her sense of direction has always been shite. My dad trained me to read road maps to avoid divorce when I was about 7.

Just catching up after two weeks away.

@rookiemere I don’t know if it helps but my Dad was depressed towards the end of his life, he had cancer, and I asked about anti-Ds and the response was it too late to make a difference. My Mum has dementia and was very anxious and is on a low dose of sertraline which has made a difference. However it takes a few weeks to take effect.

@bigdogpaws 💐 I could write an essay as I had a similar situation with my sibling having my Mum move into an Annex then realising she was facing a decade of increased caring. I tried to point out before the move happened that they hadn’t thought it through, but I was the bad guy.

However, when it went wrong it was my job to sort it out. When I mentioned returning some of the money Mum invested in the annex I was the devil incarnate and the resulting shit show is not one I would wish on anyone. I was barred from visiting my Mum in her home it was a dreadful time and severely impacted my mental health.

Thankfully my Mum is now in a home and no one can stop me visiting her. The financial disagreement is ongoing as my Mum may need the money for her care.

The points you make about joint LPA etc. are spot on, it’s not about treating DC fairly it’s about who will do what is best for the parent. Who has the time and skills to manage the finances etc.

I feel like a shit daughter, but I don't know what to do? Can I speak to her GP? Is that a thing?“

Yes talk to your Mums GP, they can’t tell you anything but can do tests and a referral to the memory clinic if it’s appropriate,

I've contacted my mum's GP several times to update them on various problems. She has at various times given then withheld permission for the GP to talk to me so I don't expect anything back from the GP, but I always think that it might be useful for them to have updates. I'm always extra keen to stress that they need to ignore the fact that my brother lives there, as he can't care for her!

@MittensTheKittens I can attest that the bad daughter's bench does indeed have lots of thick cushions ideal for screaming in to, as well as sleeping on after early morning wake-up calls from elderly parents. What you describe is very similar to some early symptoms of Mum's. As PP said, I'd try to see if her GP would call her in for a wellness check.

@Kirschcherries I'm sorry you're also dealing with this. Brother has been complaining for a while now that he'd like to be able to afford to leave work and be at home for childcare (something done for him by our parents until not that long ago). He won't say it, but I suspect part of his plan is to leave work to be her carer when he lives with her (with her paying all the bills etc so they can manage comfortably on his partner's income) and also be around for childcare. Even if he does that, which would mean at least there is someone with her in the day, they clearly haven't understood how dementia patients deteriorate or just how much care is needed in the later stages. Or the fact that although she is currently fairly happy and safe alone during the working day, there will come a time when she needs someone to help with toileting/eating etc so they won't be able to go out as a family for a day ever. Because I have tried to point some of this out, suggested paid carers/residential care and refused to commit to sharing whatever care she needs, Brother is already making it very difficult for me to spend any time with Mum. I can see that once he moves in to her place that will get worse and when she can no longer answer her phone I'll have no way to contact her. I know it will all go wrong and am dreading having to sort it all out. But I also worry that once they are all living in her place and she's paying for all the living expenses she will have no money to pay for carers even if she agrees they are necessary (and of course Brother will have even more reason to resist residential care if it would mean losing his home). I have considered passing on my concerns to social services but I don't think they would do anything until it all actually goes wrong, and even then I wouldn't be surprised if they just expect me to sort it all out anyway.

@bigdogpaws it’s awful when you can see exactly what is going to happen and then have to watch the inevitable car crash. The only advice I can give is to try and get a legal agreement in place but I appreciate that is going to be highly unlikely to happen as it’s family.

@Kirschcherries @Eclipsing - thank you, I'll add that to my to do list for this week.
Hopefully the doctor will give me a phone appointment to discuss. There are now enough instances where I've gone... WTF?!
The first few I wrote off as, that's a bit odd, or she's being daft.
But I'm starting to see a pattern.
But her short term memory seems fine (sort of), we can have a chat on the phone and then discuss in more detail the following day, it's almost her spatial awareness, timings and how things work which have gone weird. no we're not going to the post office at 7.30am-

@bigdogpaws this is my worry, I think we're at the start of something big and scary.

I woke up in the middle of the night worrying and then started writing lists. 🙁

Oh the delights of being an only child!

it’s Been suggested that Mil is now at the end of life stage - although nobody knows how long she has days or months, that has added further complications, sil does not want her end of days to be stressful so doesn’t want her moved unless a professional can advise otherwise. We are still stuck, mil is not safe and sil will not agree to change.

@glasswings do you have a hospice at home service locally? They might be able to advise/support.

@MittensTheKittens I phoned my mum’s GP surgery about a year ago and they were happy to listen to everything I had to say, although they couldn’t tell me anything. But I did manage to get her to sign a consent form so they can speak to me and they are good now at ringing me up when anything happens. sometimes it’s just “your mum has been in three times today asking the same thing” - she lives in the same street and is mobile.

Following the most recent “three visits in a day” call they agreed to call her in for another memory screening. She sailed through one in Feb (27/30) to my surprise. But this week’s one she was down to 17/30, that’s a big drop in 6 months but I’m not surprised, our conversations now just go round and round in circles because her very short term memory for verbal information is shot to bits. So she’d been referred for the full memory clinic process much to her indignation.

@ElderlyDilemmasnot that I’m aware of. At the moment sil wants a professional to make the decision that mil can’t be cared for at home but it’s in her advanced care directive that she wants to be nursed at home and the GP has suggested we just make her comfortable but she now needs around the clock care. And all siblings work full time.