Cockroach Café 🪳 🪳 🪳New Year 2025

[MereDintofPandiculation]

Welcome in to the Cockroach Café Bad Daughters’ Room, the rugs and cushions all fresh and clean for the new season.
Good daughters, find your way to the small room behind the stairs. Sorry it’s not as equipped as here, but it doesn’t get much use.
Come in when you want to share good news, or to rant, or just to hang out with others who understand what you're going through. The way MN works, hopefully this thread won’t appear in any featured lists, and the only people wandering in will be those who understand what it’s all about.
If you have a BIG question, it might be worth giving it its own thread, so as not to swamp this one.
For newbies: why cockroach? Previous long term resident of "Elderly Parents" Yolo's DM attended a 'small animal event' in a nursing home, and was presented with a "small animal with a hard back" the name of which species she couldn't remember. Her ever helpful DB suggested cockroach, and it has become a toast on here. My recent enquiries suggested more people wanted to keep the well known name than wanted to change it to something more savoury, so for the moment it stays.

Sounds a tricky situation @Acheyelbows

DS2 lives abroad and has been here for a few days. Took him to see mum and she knew she knew him but clearly didn't know who he was. He was telling her about where he lives and she turned to me and said "doesn't one of your boys live abroad"

Ouch, how did your DS take it?

Ah my mum is the same with my DS who is at uni @countrygirl99 , she will occasionally ask me about him, and I say he’s working hard at uni. On the last few occasions he’s visited her with me she hasn’t known who he is and will ask me about him and talk about him clearly not realising that it’s him sat right in front of her.

I hope your DS is ok, mine was quite upset the first time but now just accepts that ‘Nan thinks a lovely random young man has called in to say hello to her’.

He took it ok. He couldn't make it home last year so Christmas 2023 was the last time he saw her.

Popping in for a coffee, haven’t read all the posts since my last but noticed familiar names and many new ones and lots is supportive and usefyl
advice as always. It’s just over a year since MiL died peacefully at nursing home … I was recently asked to sit on a review panel for council care providers who are submitting tenders, they wanted 3 members of public who had experience of Borough care homes to give feedback. It was interesting and reassuring in many ways. Sworn to secrecy so can’t say more! My DPs are declining, mobility, memory etc. Siblings see different things. DS thinks DM is the problem, DB would rather not discuss and DH & I can see warning signs and also both sides. DM has outbursts and gets really angry at DF, sometimes physical. For a while we have worried DF is getting frail and loosing weight - DM doesn’t give him lunch. This week the GP told him he must eat more and put in weight - that caused an almighty outburst (but he only told DS). Now it’s as if nothing happened. I have historical issues with both DPs and more understanding of DM although this behaviour is a worry it is an exaggerated version of her … she has always had a tendency usually when she can’t see the others view and thinks she is being challenged or criticised. DF is a drama Queen and attention seeker who drives DM mad because he is making more and more slip ups (luckily not driving after car was written off). They refuse to enter the world of mobile phones or ordering food deliveries …. All we can do is visit between us once a month or more, and observe and act when needed sadly. They won’t discuss any help other than weekly cleaner, taxis and very kind neighbours. If DF or DM don’t tell me about the latest worry I feel I can’t discuss it. 🙁. I remember MiL started with outbursts, falling out with family on the phone etc. So I am just going to keep an eye out. Feel a bit useless and maybe I am seeing more than there is to see. They are both late 80s, wobbly on their feet, poor hearing (DM says it’s the phone not her hearing) and usual collection of meds for BP etc. The sad thing is DM can’t seem to have a phine conversation longer than 5 mins and mishears things, so I put off phoning until I am in the mood. I can see many if you having tough times and being much more involved in care, your parents are lucky to have you but look after yourselves too.

My update is a bit odd. My dad has been in hospital for 6 weeks since breaking the top of his femur and then developing post operative delirium and aspiration pneumonia. Over a week ago the hospital decided to stop active treatment and just keep him comfortable as the infection wasn't responding to high dose antibiotics. The delirium has got much worse and he's sleeping a lot of the time. We've repeatedly been told that he wasn't clinically ready for discharge. Anyway, all of a sudden today they've decided they're discharging him to a nursing home. We've been given no information about this nursing home, my sister was told that they would only consult other homes if this one couldn't meet his needs. The discharge coordinator doesn't seem to know anything and says things like it will be funded for 4 weeks and IF the delirium decreases we MIGHT be asked if we have any views! There's been no meetings about this discharge at all. Hospital social worker didn't know who is responsible for assessing his delirium once at the nursing home and seems to think it's his gp???!!! He'll be council funded eventually. Why haven't they asked us what we think, the nursing home has had issues with warning notices regarding safeguarding and it feels like they are just dumping him there because they want his hospital bed. We haven't even been able to see where he's going, it's miles away from anywhere and his delirium is so high that he's been deemed to have no capacity. I thought they were supposed to invite family even when it has to be best interest decisions? There is no POA as he always refused to do it. Can they really force a no alternative nursing home discharge?

@Lightuptheroom that sounds awful. I can dimly see the outlines of a familiar process but without any information of course it's impossible to tell. I do wonder if they are thinking palliative care but the discharge coordinator has got the wrong end of the stick? I would unleash a bit of anger and confusion on them. 8am can be a good time to call by the way...

Thank you. Unfortunately the response is that my sibling has discussed it and agreed to it. Sibling has very much been led to believe that this is to be seen as temporary and that it will all be reassessed in 4 weeks time. They're response to calls is no one available and then that the discussions have already taken place with next of kin (who quite frankly is so stressed and blind sided that hes going to die isn't taking a lot of notice)
I can see hints of the discharge to assess process somewhere under the bull dosing but essentially just moving him out of a clinical need and passing the buck.

That sounds horrendous @Lightuptheroom and I hope you start getting more information and involved - at least at the 4 week assessment. Are you able to visit the nursing home and get the measure of the manager? I’m hoping for you that improvement happened (rather than improvement required).

Hi @Juneday lovely to see you, wishing you strength with the DPs. The panel sounds interesting, I do hope things will become more joined up between NHS/Integrated Care Boards/Social Care as it’s the cracks between these organisations that caused most stress for us.

@FiniteSagacity I agree, and I think that is about arguments between who pays in some cases. MiL was being assessed for full CHC but died before the outcome. I sat in on part of that as a relative is invited - the social worker said she was determined … but it’s a flawed system. As it was MiL had no assets above the £23k limit so all her pension and a small chunk from savings went towards her care. It was social services who put her into care home dementia ward because despite the NHS originally discharging her saying she had capacity (absolute boll…s) the domicilliary care led to multiple issues and visits back to hospital. When DH got a phone from lovely social worker just to say she was going to visit her notes still said she had capacity. DH insisted on being present at the visit. Within seconds she looked at DH and mouthed ‘clearly no capacity’. I will find her a place in dementia care.

@lightup be a nuisance and ask questions. As above NHS said MiL had capacity but at one point discharge specialist said she wasn’t sure. She was overridden by an OT who did the assessment and we weren’t involved as didn’t have PoA on Health; she even said she would be mobile again with physio. 3 weeks after discharge the physio visited MiL, who was more or less bed bound because she hadn’t built back strength after complex fracture with two ops and metal pins…. I asked MiL how she got on with physio and I quote. ‘He was lovely he said my concrete sofa was very nice’. That’s it, no more visits and she was found on the floor by a carer, shelf pulled over and tv, narrowly missing her head. Back to hospital of course. The falls alarm didn’t work because she slid slowly from
the bed and because of dementia she forgot what her new watch was for so didn’t press it! So pester and make your points and make sure appointments for visits at home are made, any equipment needed in place etc. Good luck.

funny thing my parents came to stay and DM had her falls alarm on still. 🤔

Brief interlude - some of you may enjoy this:

https://poormansfeast.substack.com/p/vacationing-while-being-a-caregiver?utm_source=post-email-title&publication_id=715339&post_id=164256509&utm_campaign=email-post-title&isFreemail=true&r=53w3&triedRedirect=true&utm_medium=email

Solidarité all 🍷

@JuneDay he's not going home x hospital have discharged him to a nursing home after bulldozing my sister into agreeing that there was only 1 place available, I quote 'because he's council funded' The discharge co ordinator doesn't even know who does the re assessment after 4 weeks. Unfortunately for me I used to be employed assessing people to go to into care.. but my sister decided to forget about that bit..

As far as the hospital and discharge co ordinator are concerned they've had a discussion with family (they really haven't)
His current status is accute delirium after a fractured top of femur operation. He hasn't been out of bed in 6 weeks. They've assessed he has no capacity, we don't have POA at all. He also had repeated aspiration pneumonia and up to now was on 'palliative care' He has no clue where he is, who he is or what he was even in hospital for but sister has decided that he would be 'better of' not in hospital. He may be, or the move will kill him anyway.
He's got a long long list of 'co morbities' and has been disabled for 50 years. The fall has taken him 'off his feet' completely , can't even go to the toilet. He was always going to be 24/7 nursing care, I object to the decision making and sending him somewhere none of his family have even seen in the back end of beyond with some quite obvious problems. Discharge co ordinator has lied and said that there is no option, no choice at all but the gp reviews the placement in 4 weeks time! Never heard of a gp assessing baseline and certainly not a gp who has potentially never met the patient.

He was on 4 care visits a day prior to the fall so adult services have extensive notes on him, nobody has actually read any of it.
The consultant rang my sister last night to tell her he doesn't need any of the medication he was on before admission (interestingly he was only on water tablets, calcium chews and paracetamol so not quite sure why the consultant thinks that's significant.) Without the water tablets his indwelling catheter blocks extremely quickly (had in place for 15 years so what do we know!) and his feet swell up like balloons..... but heyho what do we know? Oh and we should be reassured that he 'might' be able to access physio in the nursing home IF the delirium suddenly magically improves...
He hasn't walked further than across the room in 50 years due to spinal fractures but yeah ok then!
I give it 24 hours maximum before he tries to climb out of bed whilst pulling out his own catheter .....

My mother is insisting that my youngest was born in 1963. Won't hear otherwise. I was 4 in 1963.

This came up in my news alerts!
https://www.bbc.co.uk/news/articles/c5y4zzwr943o

I’m not impressed with their solutions. I’m not interested in extra flexibility around appointments. I want it to be easier to get a place in residential care rather than this farcical staggering on at home with a few carer visits a day. For daughters not to be expected to pick up all the pieces to enable that to happen.
And I doubt “carents” leave would help. I’m already entitled to four weeks of unpaid leave per year for children which I can mostly not afford to take, and would struggle to get my job done if I took even more time off!

@EmotionalBlackmail Interesting article. As you say, solutions are not obvious. My parents desperately don't want to go 'in a home', but are really struggling to manage, even with me going in every day. I have my own family and don't plan on moving in with them. I don't know what the solution is, but the default always seems to be women picking up the slack. At least the article raises some of the issues. Politicians talk about some abstract 'care crisis', but it doesn't do justice to the complexities of the situation at all.

Yes, there’s no acknowledgement that care at home means someone (usually a daughter) running around with shopping, sorting out house maintenance and finances.

Not to mention the chaos around hospital discharge and care arrangements!

I am glad someone is trying to raise it as a conversation although it is such a complex issue it doesn't really represent it fully at all.

I run two households. My DB does nothing. Carents leave would not help me or my family as I am the main earner and it would impact my family, my kids. Appointment flexibility although helpful for juggling them around work doesn't actually reduce the burden as I still have to organise, book, attend and provide more care on days when DF has appointments taking time away from my family.

In the two weeks when I should have been relaxing on leave from work I have taken my Dad to or managed by telephone 5 appointments for DF, sorted out a medication issue and organised several other future appointments. That is not including organising shopping, the gardener etc.. Today I wasted several hours at my DF's waiting for the barber to turn up (he didn't having forgotten despite me only arranging it on Monday).

I could have spent that time writing materials for our upcoming tribunal for my son's SEND needs. I couldn't sleep last night due to the stress. It all falls on me.

It is mainly women. Men can get very wafty/"busy-and-important".
Not all of them - I remember a friend of my mum's chap who stayed with them when he was en route to do his 2 week shift looking after his mum - iirc the brothers had a rota.

Hmm I wonder if most men who actually DO caring are from an all-brother family? A good research project there...

I am still "away" but actually swapping texts quite a lot with herself, as I'm in her home town. Very much "you can never go home" territory as so much has been torn down and redeveloped. But no insoluble major dramas as yet !!!!

Care leave is utterly useless in my situation as a co-owner of a micro business. It's good that I have flexibility, and bad, because that means that people think I am always available and can drop everything. The person who REALLY NEEDS respite care is my poor mum, who still does so much at home for my dad, but I don't know how that could work. Any suggestion of 'a home' for any purpose - even respite care - triggers terror in both of them. They've visited many relatives and friends in care homes and haven't liked what they've seen. I can't say I blame them, but an 85 year-old shouldn't be having to care for an 89 year-old who has limited use of one arm and frequent continence problems. I am feeling the guilt at allowing it to continue, but they both have mental capacity. I don't have answers, just lots and lots of questions.

Oh, and on the subject of men stepping up, my DB has actually been brilliant. He lives 200 miles away, while I am very close to my parents, but moved in with them for a couple of months recently while I was recovering from surgery, and has been up and down a few times since, picking up one or two appointments I couldn't manage. He lives alone and works from home (can work from anywhere), which really helps a lot. My sister is also 200 miles away and can't help much because of her personal situation. So while I do feel like women are often considered as the default carers, there are men who step up too, like my lovely DB.

@MysterOfwomanY my last boss was fantastic to his mother who lived to 100 before dying last year. He more or less moved in, working from there (we WFH) and running her house, sorting appointments and carers etc. Guess what, no sisters and 1 brother who lived abroad.
But he’s a rare example I think. My own brother is ok, he does call in most days to see DM and will cut lawns and do some food shopping and cooks extra portions for her, it’s just that I do every bloody thing else.

We had the same issue with ILs. FIL had a long list if co-morbidities but insisted on looking after MIL at home. With him I think it was pride more than anything, he wouldn't accept that anyone else was capable of understanding her because she was non-verbal after her stroke. Any suggestions of respite care would send him into a rage and he would be utterly vile to anyone who said it despite constantly complaining about his lot. Even when he needed hospital treatment he told us that SS were arranging cover and told SS that we were covering then 2 days before told softest SIL (not even one of his own DC) that SS had let him down and she ran herself ragged sorting a rota. He was caught out because I spoke to SS. After that he withdrew permission for SS to speak to anyone else.

I have to say I had a male boss who was very good and was frequently running his mum and dad to appointments. His mum dies the same week as my dad and in the run up we were often discussing work with me at mum's (during COVID and she couldn't understand why she couldn't visit dad in hospital) and him in a hospital car park. He had 2 sisters, 1 not so involved die to location.

I'm from a large family, yet it falls solely to my sister and I, my sister nearly had a break down last week due to the expectations being placed on her by the hospital who basically wanted to kick him out and didn't care where they kicked him out to. He's now been transferred to a nursing home none of us had any input into and not unsurprisingly has gone downhill again, spending all day crying that he wants to go home. Still has acute delirium so his understanding of the situation is zero. We treat our dogs better than this.