🪳 🪳 🪳 Cockroach Café Late Summer 2024

[MereDintofPandiculation]

Welcome in to the Cockroach Café Bad Daughters’ Room. all fresh and clean for the new season. Join me over here on the sofas amongst the rugs and cushions if you’ve come in from the rain, or over the other side in the shade if it’s 33 degrees outside. Looks like it’s either one or the other.

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.

@Newmum738 i removed all of mums normal knickers from the house and left her packs of tena knickers in their place. As her dementia worsened she couldn’t work out how to unfold them from the pack so would go without with resultant little accidents. I got quite strict with the carers and insisted they did pad checks and pad care as necessary at each visit, as they asked mum if she was wearing them and she always said yes even when she wasn’t. That worked well, combined with dry night pads on the bed as mum spends all day in bed. The amount of laundry reduced considerably!

had mum not been admitted to hospital I would have enquired at the GP for an incontinence review/referral. I believe certain medications and or conditions can make it worse (e.g. UTIs) so a medical review of your mum is probably a good start, and they can signpost other services in your area if she’s medically ok.

Remove knickers and insist on pad checks/care. Thai should work. She is staying with us this week because I live a fair distance away. She is worse in her own home and because she presents well, the carers are saying she is fine (horror). Sadly, I think this is her last visit to us. We have a 6 year old too and DM's hygiene is so bad, it's just too much for us to manage 🙈

She has had a hospital stay recently and they say she is continent so the medical definition must be very specific because her situation is in no way practical!

Sounds like the nurses may have been prompting her to go to the toilet, plus she wouldn't have been cued to put things down an unfamiliar loo. I think the diagnosis 'cognitively incontinent' should be used a lot more.

I think my update is of paltry significance compared to all of yours!
Driving off, this morning, to a twice-postponed Xmas meetup with some of the few relatives I have left, and the phone goes.

It's the hospital. My elderly is going home, they say.
"oh...right. thanks," I say, because I am currently 2h drive away (and still somewhat unwell). The lady herself then texts me to say she's home. Ok. Great.

...Four Hours Later...

Her care firm ring to say they can't get her up out of her chair for love nor money, so they're sending her back.
"Oh... Right. Thanks," I say again.

I guess the hospital was keen to have the bed, and she was keen to get home, and neither of them wanted to really consider how little physio she's had (because it's Xmas).
But the carers are the ones who clean up if she can't get to the loo or commode on time, and so they CAN'T stick their head in the sand.

Welp. Guess when I get home this evening I'm going to be ringing round and checking she's somewhere safe, and lending her a phone shoulder to cry on, as she - of course - wanted to get home.
Would have been nice if it had worked out. But it didn't.

At least in a few days I should be well enough to go visit. I wouldn't have gone anywhere today even if it hadn't been the last chance to see one of them for months (lives a long way away).

All you lot fantasizing about death or disease coming to save you - I have been living the dream this past ten days. But it'll be back on the treadmill soon...

Yes, that makes sense!

@MysterOfwomanY they don't seem to consider the bigger picture, only what's under their nose! Sorry it hasn't worked out this time but hope you were able to enjoy yourself!

It was nice thank you. The only bit of Xmas we've had really - illness plus work being done on the house means no decorations, no cooking, no cards sent. It was good to pull a cracker and see a Xmas tree!

Got off the phone this minute with my just-visited relative. She managed to get my elderly to answer her phone, and

• she is still at home
• She knows nothing about going back into hospital
• Her 4pm carers didn't show
• She was a bit confused and seemed to think it was the carers calling her

We are still driving back home. I'm leaving just-visited to put a rocket up the care company's bottom in the first instance as she's excellent at that, and we'll take it from there. I'm not shocked but I am VERY unimpressed. FFS...

It's enraging, isn't it? A colleague of mine is dealing with her elderly and ill mother's needs at the moment, and she spends half her time chasing people to do the things that they ought to do without telling because it is their actual job. She's exhausted and everything is five times harder than it needs to be.

I've slightly unexpectedly graduated from this thread: my own mother is OK so far, and MIL died yesterday. I really thought she was going to outlive all of us. I can't be sorry she's died - she was blind, deaf, bedbound, suffering from vascular dementia which meant she didn't know us, and desperately unhappy - but I am sad for the woman she used to be, who was never anything but kind, generous and welcoming to me.

I’m sorry for your family’s loss @NefretForth but it sounds like your MIL is at peace now.

i agree entirely with the chasing. A little example - I rang mums pharmacy first thing on Monday morning as I know they deliver her blister pack on Tuesdays, and it being Christmas Eve I thought they’d need to know ASAP that she was in hospital. They said thanks, and the hospital pharmacist confirmed a couple of hours later that they’d sent through the official notification. All sorted I thought, until I got a phone call on Christmas Eve saying oops we forgot and delivered some meds to your mums house, can we have them back? And then got a bit off with me when I said I’d drop them off when I was around and they were open, and no, I was not going to drive 100 miles to hang around the house waiting for them to come and pick them up.

in the big scheme of things it’s just a small task, but those small tasks add up to a big mental load very very quickly.

I sent a very businesslike email to the GP and social services yesterday saying I'm not satisfied with the assessments carried out last week and detailing what I found on Christmas Day and putting in writing the (main) erroneous things mum had told them Given the GP assessment seemed to be based entirely on 1) the house being clean and 2) mum could remember her date of birth, the fact that behind cupboard/freezer doors it was a very different picture should demolish that. It probably won't get me anywhere but it made me feel I was doing something. Copied in the care company because I reckoned that they were the most likely to come up with practical ideas that they could charge for.

Apparently when the ambulance arrived she was deemed fit to stay at home. Possibly this means that the adrenaline rush from the threat of being taken in again gave her enough of a boost that she could get out of her chair? But she sounds happy and the carers are coming four times a day, so, okay then.

Crucially I know where she is now and there's no urgent need for me to go down there. I can wait until I feel more recovered. There was a spell, when she wasn't answering her phone and the hospital said they definitely didn't have her, when I thought I would have to drive down and check, and that was not an attractive prospect. I kept falling asleep this afternoon and that's not what you want for a car trip :/

PS @countrygirl99 I made sure to ask her if the carers had thrown out all the out of date food in the fridge!

Thanks, @funnelfan . Off up there on Monday to make a start on all the admin.

Regular lurker here and have huge sympathy for everyone on here. We don't have things anywhere near as bad, MIL has all her faculties and is just about managing on her own with 2/3 weekly visits from us, but she is lonely and (understandably) at 94 with heart problems, terrified of dying, not being dead as such, but the journey getting there. Subsequently we're now getting a lot of calls saying she thinks it's the end, and please can we go over, but by the time we get there she quickly perks up. It's anxiety.
I get frustrated with her because sometimes she does so little to help herself, but at the same time feel so sad for her because her life really is so rubbish. Meanwhile we're getting older (DH is nearly 70) and frittering away however many healthy retirement years we may have left, just being on standby.

@MovingSwiftlyOn I get that feeling of having retired to do all the the things you couldn't while working, and then ....
It's normal to want your life back.

Guess whose relation is back in A&E today? (Chest pains, a precautionary visit. They've given her breakfast and it sounds like they'll send her back home when all the tests check out. At least I know where she is...).

So as per everyone's experience DF phones me today to say he is being discharged. No communication with family from the hospital.

I currently have a D&V bug and two sick kids at home. DF expecting someone to stay overnight with him. He has suggested that unreliable DB does it, but DB's response when I told him this and that we cannot do it was 'well it is not ideal'. Which means he will leave him when he doesn't want to be there any more.

I have told DB that it is on him and phoned the ward to let them know the reality of the situation. They have said they will let the OT know. So poorly currently that I just have to let the chips fall, if it ends up a failed discharge then DB has to deal with it.

Oh and apparently they tried to phone me to see if I can empty his commode once a day when he comes out. Not happening.

Luckily she was back home by teatime. But, Jesus.

Day 10 of mum being in hospital “for assessment” and the ward appears to be in no hurry to move her on. She’s (too?) comfortable and seems to spend 95% of the day asleep.

Every time I speak to a member of staff they say there will be a best interests meeting but can’t tell me when that will be. I’ve made it clear that I live 100 miles away and work so I need 24 hours notice to be there on a weekday.

i can’t fault the actual care and attention she’s getting, but the communication between staff and patient families is lacking. The same could be said when my late MIL was in hospital in another part of the country. I presume calling patients families just drops off the bottom of the list of things to do when they’re busy.

@funnelfan nothing changes. When my eldest was at Uni he had a bad accident and had to have his leg pinned, plated and generally reassembled. His student house was considered unsuitable for him to return to short term so he had to come home. We lived nearly 3 hours away and I worked an hour away in the wrong direction. In addition the access to our house is 30 metres up an unlit footpath. And there is no parking at Leeds General so I would need to park in a nearby multi storey, get him to the entrance then fetch the car to pick him up. So I told the hospital I would need to know before midday that he would be discharged or it would be the next day before I could collect him. They phoned at gone 4pm on a work day and were very put out that I wasn't coming straight away. After all 7 hours driving plus faffing after a day at work couldn't possibly go horribly wrong.

I wish they would consult with families more, yes the patient has capacity (or maybe not) but if you are expecting family to provide care or have things in place when they are discharged then surely those conversations should be had prior to discharge.

I have been to see DF on his ward pretty much every day other than yesterday when I started vomiting. Not once have staff had any conversations with me about his care needs or what help we can provide.

Yes, couldn’t agree more with this. We could never get any information from the hospital about MIL but they still expected us to be available at the drop of a hat to collect her and sort care. Really the NHS has to decide - either it liaises properly with families or it works on the basis that elderly and confused patients have no-one available to support them on discharge. Present arrangements are just setting everyone up for failure.

Totally agree there are all the expectations family will do all the things but without any consultation with family. I don’t know if they believe the patient or just copy and paste the same into every care plan. We made it abundantly clear family could only visit weekly in phone conversations.

After a few discharges where we ended up collecting late at night and not knowing if carers and community nursing would be attending the next morning we had to resort to refusing to collect, to make the hospital responsible for safe transport and support services being in place.

There are good people in the system but the NHS and social care being separately funded causes patients to be either stuck in limbo or pushed between services like a pinball.

It's barmy - it's vanishingly rare that care needs arise outwith some health crisis.

I dimly remember some point where Mum was in hospital and there was incoherent chat about discharging her when clearly no adequate preparations had been made. Can't remember whether I got her partner to take her house keys out of her bag and home with him or whether we just talked about it.

There is soooo much not-joined-up stuff around health and social care that it's a low hanging fruit for any government. Not just hospital discharge, but the cliff edge for kids with mental health problems or in care when they hit 18. IT'S RIGHT THERE GUYS, FIX IT!!