🪳 Cockroach Café Spring 2024 🪳 🪳

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.

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.

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

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.

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.

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.

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.

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.

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.

@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.

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

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

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.

@funnelfan thats really tough. Are the Tena pants in her knicker drawer? Can’t see what else is possible… would period pants be any good as more knickerlike?

Any suggestions needed please.

DM mid 80s, Parkinson’s and dementia getting worse, spends most of the day in bed, carers 4x a day. Not incontinent as such, but don’t always make it to the toilet and thus has little wee accidents. Mostly ok with poo continence. Switched her to Tena pants successfully a while back.

problem is, she’s now forgotten she needs to wear Tena pants, and has reverted to wearing normal knickers, with the obvious consequence of an increase in laundry of bedding and nightwear which is causing issues as carers aren’t supposed to do it (some do put on a wash when they change her bed, but then no one takes it out again).

i have asked the carers to always check she’s wearing Tenas at each visit (she says yes when she isn’t), there’s a note on the system and a physical note pinned above her bed. I’ve removed every pair of knickers I can find in the house and left plentiful packs of Tenas in her room. She’s still not wearing them, and I’ve found yet another pair of wet knickers hidden in her clean clothes again.

can anyone think of anything else I can do apart from ring the carer office again and re emphasising the point?

Lovely nurse at Care Home continues to say all the right things, made DH feel a lot better. And helpful call from his brother (part time undertaker), admin all dependent on Dr now. So many friends, here are elsewhere been through this, it is a whirlwind!

off to celebrate a family birthday, much needed change of scene.

@Juneday I'm so sorry for your loss and I wish you strength for the days ahead.

Sorry for your loss @Juneday I hope the clearing out of your MILs room and all associated admin goes smoothly

Sorry to hear this.

Sorry for your loss @Juneday . Good that now you can remember her the way she used to be.

Oops thanks @funnelfan .posted in a rush.
so sorry for your loss@Juneday 🌺🌺

@Juneday so sorry for your loss Xxx

I think you meant @Juneday ?

Sorry for your loss too June. It sounds very similar too my MIL when DH also got the “come now”, then “don’t rush” calls. I’m glad she’s at peace and you can re-remember the woman she was before dementia.

Thank you all, worse bit will be going back to nursing home to clear space. But also a huge relief now, it’s always a shock but also been expected for a while.

I'm very sorry for your loss, @Juneday.

The 'tell us once' service helps reduce the paperwork.