🪳 Cockroach Café Spring 2024 🪳 🪳

[MereDintofPandiculation]

I’ve had a good clean of the place, replenished supplies, and brought in pots of snowdrops and daffodils to remind us Spring is just around the corner.

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 mor savoury, so for the moment it stays.

period knickers - possibly, but it wouldn’t help with the laundry issues as I’m only there once a week. Not sure that having a pile of unwashed knickers for a week would be a good idea.

I’ve dropped the carer office a essay line on the laundry issues and ended it with a reminder that if the carers check she’s wearing her Tenas then the laundry issues recede.

that’s a lot of laundry. The main issue is that she has a private slot and the carer will strip her bed and put on a wash but then it’s not flagged to take it out again by the regulars as “They don’t do laundry“ so it sits there going musty and I end up having to rewash it anyway at the weekend. Plus the machine being totally overloaded so it doesn’t actually wash. I’ve suggested that the carers just wash any soiled bedding/clothes as needed and leave anything else for me, if they would please sort out the system to flag to each other the machine will need emptying. Hanging up a single sheet and nightie shouldn’t be too onerous and fitted in to one of the daytime calls.

Bloody goldenballs brother. That's all, got it off my chest!

🌺@countrygirl99 vent away…
@funnelfan it does make life harder for you than it could be…. Another job…

@funnelfan I’m considering adding private visits but worry it’s a minefield with social care. When you’re only able (or rightly only willing) to visit weekly but care plan visits just aren’t enough.

I’m horribly busy at work at the moment - long hours and high stress - and spent my bank holiday Monday writing attendance allowance form which I will submit as attorney. Rather depressing to zone in how far DF has deteriorated. I can’t let him see it as he would insist I’m wrong (I’m not) and if he gave his presentation of how well he is doing he would get nothing.

But despite all this and spending lots of time I don’t have sorting out his finances when I speak to him it is mainly complaints back. He worked firmly 9-5 so has never really had a concept that I sometimes have to work much longer hours, and it certainly has no understanding now. Ugh.

It’s a mixed blessing. The carer that does the private cleaning hour is one of mums regulars, and she really looks out for DM and I trust her. However she’s also told me that if the carers are swamped, then they're told the care part is the priority and the private work gets skimped (but we’re still charged). I think she tries to make up during the week with a few extra minutes here and there - she’s always on top of wiping down the kitchen surfaces and emptying the bins during the week, but it escapes me why she doesn’t remember to empty the machine herself.

it’s certainly not the same as having a proper cleaner come in for an hour. They’d get a lot more done to a higher standard.

Yes. I’m not too bothered at the moment, DM is is getting so frail that I want to see her every week to see how she is. I noticed this weekend that she’s getting out of breath just doing something as simple as changing her clothes and she has no strength to pull herself up the bed. She’s also started sundowning quite noticeably. So I don’t think the situation is going to carry on long term because at this rate something will happen soon.

MIL had a phone appointment with the doctor to follow up her memory assessment a few weeks ago. She didn't want anyone there so we only have her report of the call. She says she failed the "draw a clock face" test and has been referred for a brain scan. She seemed reassured that they said no change in medication was required and they will review in 3 months.

Presumably, they wouldn't refer for a scan if they weren't concerned? Dehydration was mentioned but it seems far-fetched to me.

Does anyone know if a scan is always conclusive? FIL had dementia confirmed by a scan, but does it always show on a scan?

I'm not sure why it feels so important to me to get a diagnosis, as it's not at all clear what next steps would be. I've just been so concerned about so many incidents, I feel she and we need to know what she is dealing with.

Have any of you experienced someone getting a diagnosis while they were still able to understand it and be actively involved in planning for their future? Currently there is a lot of denial but also a lot of small crises - I'm not sure if having a formal diagnosis would actually make any difference, really.

Scans can diagnose some types of dementia, but I don't know that they can pick up all of them yet.

Failing the clock face test is a significant cause for concern, I'm afraid.

There are definitive scans for some types of dementia like Alzheimer’s. However the scans aren’t universal, so a negative doesn’t always mean they don’t have dementia, it just means the type they have doesn’t show up. If that makes sense. DM has brain vascular changes showing up in a scan, she also has physical symptoms consistent with both Parkinson’s and Lewy Body Dementia. The doctor said the diagnosis can only really be confirmed at post-mortem, so they treat the symptoms and essentially she is in the system as having Parkinsons. The Parkinson’s meds certainly help.

A diagnosis is useful for opening up doors to help. Regarding planning, DM realised before me, she used to talk about “my dementia” when I thought it was normal old age and before I realised the extent of her cognitive change. I think a lot depends on the person themselves on whether they will be involved in planning their future or whether it’s too upsetting to face. You can certainly ask them what their preferences would be in specific circumstances in the future, and get them recorded. And get PoA in place before any further decline if it’s not already done.

Power of attorney was clearly sorted for both PIL at first signs of FIL confusion, so that's all done, but thanks for the crucial reminder.

There are numerous incidents which add up to a pretty clear picture but on good days she is still amazing, and she seems to forget the bad days immediately afterwards, so she has said I think her memory is worse than she does. But time will tell, and the scan may help. Thanks @funnelfan, @NoBinturongsHereMate

After the anaesthetist/cardiologist/surgical team fuck up¹ of a few weeks back, they finally got their arses in gear (after a kick from both PALS and the head of scheduling) and managed to set up all the appointments in the right order and before the date of my step dad's operation.

Unfortunately the answer after they looked at all the tests was no. Three month delay to stabilise the heart before they'll attempt operating on the cancer.

Which would be disappointing but reasonable if these were new scans. But he had all these test results and the original pre op 3 fucking months ago! If they'd just looked at them when we asked, he'd have been on the new meds for the requisite amount of time already.

¹ For those without a dossier: can't have cancer op until he sees the anaesthetist, can't see anaesthetist until he's seen the cardiologist, can't have an appointment with the cardiologist until after the date of the op.

Not an oldie but me , had a letter today saying an appointment was made at my nearest hospital for Monday for a 6 month wait referral , trouble is I will be at another hospital 30 miles away to drop off a ecg machine I'm having a 24 hr test for.
Telephoned to reluctantly cancel my awaited for appointment and to explain why, for them to book me in at the hospital I will be visiting .
Made my day.

In the same theme, when DM was first referred for a possible Parkinson’s diagnosis, the wait list was above 60 weeks. The consultant actually wrote back and said given the age of the patient we recommend referring to Elderly Care as she might get seen quicker. In the end we inadvertently skipped the entire backlog when she got admitted due to her “funny turns” and she got the scans and diagnosis within 48 hours.

you can get excellent care in the NHS but the system for organising and delivering it effectively appears to be completely stuffed. Whats the outcome for your step dad @NoBinturongsHereMate, will they operate eventually once they’ve sorted his heart, or is the oncologist now taking a different tack?

Thank you all for previous advice and apologies for asking again.

My DM was admitted under an emergency AWI last week. She has then be detained under 28 day order pending assessment. Her consultant phoned me yesterday as did her GP & both advised she requires 24 hr care. SW carried out assessment & believe she’s safe to discharge (she’s absolutely not) & I told them flat I won’t be supporting her in any way (been signed off with nervous exhaustion).

I have asked for assessment in writing and advised I’ll respond in return in writing. I am up the wall with anxiety & cannot go back to caring for her as I was. Any advice on handling SW gratefully received. TIA

@NoBinturongsHereMate I sympathise. DH yesterday had a phone call giving the result of his scan … which was in January. Next step - another scan, which will be “in about two months”. It’s a good job he’s not the worrying kind

you can get excellent care in the NHS but the system for organising and delivering it effectively appears to be completely stuffed.. And people say “what we need is more nurses - get rid of all the administrators!” How do they think the right information ends in the right place? (Let’s not mention duff computer systems)

What's the outcome for your stepdad, will they operate eventually once they’ve sorted his heart, or is the oncologist now taking a different tack?

Plan is to operate. There is a chemo option but usually only used as second line treatment - no idea if it's worth doing on it's own. If they can't get his heart stable for the 3-month target it might need a rethink.

Good result, @KittyCatsby !

I hope the 'scan in 2 months' is a sign they don't think it's anything too alarming, @MereDintofPandiculation .

@Patsy7299 I think your everything in writing plan is a good one. Keep using the words 'unsafe discharge' and reiterate that the consultant agrees. Do you have a named discharge coordinator?

I don’t but I’ll find out, thank you!

Hang on, I'll find an official thing you can wave at them..

Not the one I was after, but could be useful later or to others:

https://www.nice.org.uk/guidance/ng22/chapter/Recommendations

Here's the one I was thinking of: https://www.nice.org.uk/guidance/ng27/chapter/Recommendations

Especially 1.3.5, 1.3.8 and most of section 1.5.

Thanks @NoBinturongsHereMate Yes, they've decided they don't think it's anything at all, but want a couple more scans to check that. Nice to be getting good medical news at last.

@Patsy7299 I’m so sorry the SW is putting you through this. I cannot understand how SW can go against the medical advice in your DMs case. We had doctors saying unsafe and 24 hour care for DF after they’d assessed over a number of days and MDT had discussed his case.

SW had a chat with DF, had another MCA done on the ward contradicting the MDT and pushed to discharge with a home care package of visiting care.

Wishing you strength to keep saying no, unsafe discharge and that a care home is the only way.

@MereDintofPandiculation I hope all continues to go better for your DH.

@NoBinturongsHereMate thank you for sharing those NICE guidelines and being specific.