The Cockroach Cafe 🪳 Spring 2023

[MereDintofPandiculation]

Welcome! I’ve done a really good clean of the place overnight, and brought in daffodils from the garden to remind us all that spring is around the corner and better times on the way.

Come in when you want to share good news, or to rant, or to ask a small question that doesn't warrant its own thread. Or just to hang out with others who understand what you're going through.

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. So 🪳 mes amis/amies, and may you all live to fight another day.

Will be interested to hear from relative at med school how long they spend in lectures on dementia.

In general elderly and frail and disabled in hospital having issues with food being fiddly to eat, jug of water too heavy to lift and spilling drinks. Being given food whilst asleep and it taken before they wake up.

@countrygirl99 @Juneday thanks for the support! It started when my Dad walked into hospital and then never came home. I've now got my mum and in-laws in their own journeys so going to have plenty of content and journaling is therapeutic so a good channel for my frustrations. I'll make sure you are at the front of the queue for a copy! Open to including contributions if anyone wants to join in!

@Newmum738 I still get angry at the way that nurse spoke to me after mum phoned me sobbing because she thought dad had died and the hospital were hiding it. Really snooty and "I don't see why it's a problem it was a straight forward message". I'm afraid I told her in no uncertain terms that I would expect a bank employee to understand dementia better than that and perhaps she had better sign up for some training.

Newmum738 I have been keeping a basic diary, not well written or hugely detailed but it helps somehow and will be useful too for MiL and referral back to Dementia Dr. As it charts decline and good periods.

Thanks you to MN who mentioned special services for refuse collection - organised that today - one less worry. 👍

All psyched up to talk to care home where my mum is to see if they have a permanent place for her (rang Thurs, deputy manager said he was 80% sure they would, ring back Tues), but manager not there. I feel quite stressed about it all really, as it's clear that because mum is a self-funder it's up to me (I don't live in the same country) so I'm looking at taking a couple of weeks off work to try and sort it unless this home comes through.

Regarding seeing holes etc, we had a lady living in one of the homes who could see a bicycle and a cat, to the extent that she would often stroke the cat. Dementia causes problems with mirrors, patterns (particularly flooring) and dark colours. We were given training on something called 'the Eden Alternative' which was supposed to be far more holistic in approach and accounted for the person still wishing to go swimming etc, sadly as with many ideas, it was quickly realised that lack of staff and lack of funding was a major problem. The local authority also commissioned training from the Alzheimer's Society which was excellent, particularly in relation to how people behave and the 'missing links' which mean your family member may not recognise you as in their mind they are 18, so how can they have a son or daughter in their 50's, and they are married to a handsome soldier, so who is this 80+ yr old man in their house.
With regard to the aggressive/violent behaviour, normally an emergency assessment will be called and GP will first try various doses of medication before looking to section as it's recognised that it can be triggered by infection (urinary tract infections being a major cause of delirium and dementia type behaviours in elderly, particularly gentlemen)

With my own parents, massive frustration being caused by none of the professionals actually talking to each other. My dad has to have a lot of district nurse visits due to medical needs, they have witnessed my mum's behaviour, have witnessed the swearing and screaming, tell us they are making a referral to social care... Weeks later they are shocked that no one has contacted the family... Nope , social services rang my mum and asked her how she was and closed the referral when she said fine!!!

Oh and district nurses telling us that in their opinion my mum hasn't had capacity for a long time, yet the social worker says she definitely has capacity based on the fact she can take herself to the toilet (my mum currently has a short term memory of around 3 minutes before she repeats herself word for word)

We could probably write a chapter each., @Newmum738 A personal favourite, while MIL was still at home, was the detailed psychiatric report sent directly to to the aggressive, angry, paranoid dementia patient in deep denial about her condition. Aggressive angry paranoid person living with a vulnerable elderly husband. That was a fun day.
I think we've been fortunate so far with the quality of care she's received in hospital and the nursing home. But some of the background/administrative stuff has been less than ideal. And of course you make assumptions. One urgent adult safeguarding referral took so long to be actioned that she'd been sectioned for over a month before anyone called to see how things were. We'd naively imagined that 'urgent' meant 'by Monday morning at the latest'.
Still expecting to be tripped up by this kind of misunderstanding, tbh.

Everything seems to be urgent when they want you to do a thing (find permanent placement eg) but somewhat less than urgent when they are doing a thing (calling you back, following up on social work report etc etc)...

You would think that council should be keen for self funders to self fund wouldn't you. Even if only partial funding.
When MIL went into the care home last June her half of their savings was just under the limit so she was fully funded. When FIL died 4 weeks later all the savings where hers and that took her into self funding. We are still trying to get it sorted out. Now the total "owed" according to the monthly "final demands" is more than her total savings. She owes the council £000s but not that much. Once a fortnight DH chases. Every few weeks they ask for the latest bank statements and someone "has it on their desk". And so it goes on.

@Juneday I agree with you about training including "being done to" . I used to work with adults who had physical disabilities and as part of my training I wore the glasses that blocked out peripheral vision, was led round a building and up and down stairs blindfolded etc. I especially remember being spoon-fed- it was a horrible experience with spoon after food coming at me without pause with hardly time to swallow between one mouthful and the next.

Light up the capacity thing is bizarre, I looked it up and there are reasons for it seeming so broad I think to help those with MND, Parkinson’s etc whose brain is 100 per cent BUT we had MiL sent home not to care home which is what everyone including discharge coordinator suggested, because MiL had capacity and wanted to go home. We knew she was thinking of her home in her happy second marriage but ward was closed due to Covid and OT would not listen. MiL has told everyone since she doesn’t know where she is or why. But SW has taken that on board and we will give her time to research places 🤞🤞. She was much brighter today, but it was 3.15 and I saw tea time Carers leave. Assume bed time will remain at about 7 pm. Not calling in for a couple of days now, bins sorted and a full fridge, piles of clean linen etc.

Sharing a small win - mum's attendance allowance was approved. it took one month from application to receiving the letter, which is better than I anticipated.

It covers about 20% of the cost of her carers, but every little helps I suppose.

Great news funnelling. I have my mum's in too. And blue badge applications for her and dad. Fingers crossed.

Great news on attendance allowance, on my todo list - my mother (as opposed to MiL) has applied, I will be interested to see how she gets on. She doesn’t have Carers or a diagnosed medical need, but gets wobbly on her feet and has managed to get a blue badge so that my father can drive her everywhere .., she is going deaf but won’t admit it!

we seem to be on the slow tread mill, SW says until a physio has been and seen if MiL makes any progress (2 OTs both think she won’t) then SS won’t look into care homes because her needs may still change. DH lives in hope she will get strength and confidence back to walk with a walker, I am anxious she will have another fall and will be back in hospital. The next two weeks will be crucial. In the meantime taking new kitchen large bin to flat so that there are no more split black bags spilling onto the floor. 🤞. Taking back second wash of the week - thankfully bought new sheets and nightie weeks ago.

just as I think I understand the care system I get confused again, good luck alL those looking for places and those being told their relative has to change / which is just another upset for them.

My mum has AA - applied end of Feb and they backdated it too. Will now have to update it to day and night care, although that will put her slightly over the tax threshold I think.

Good news today (I think) which is that the care home she is in for D2A has a permanent place for her. I have a lot of emotions about this, but I know it's the best thing for her (she wants to go home, but can't recall the address, nor when she saw me last, nor that she had carers at home etc etc.). But this is it, isn't it? And the documentation for the court of protection application is gradually coming together. I don't think she is going to be very pleased with me...

@rhetorician Huge progress. Don’t be keen to take any of the credit for the new arrangements. Skilfully, make them all the ideas and insistence of the health professionals. You merely are making the best for her.

Yes - I wrote her a letter to explain things but said a lot of "the doctors say", "the social worker thinks" etc etc

I was on your other thread and I’m so glad the home has a perm place, @rhetorician

I believe attendance allowance is tax free, @rhetorician

Yes - here:

https://www.gov.uk/income-tax/taxfree-and-taxable-state-benefits

Ah great - I did wonder about that. That's helpful - more from an admin pov as amount of tax due would be tiny

We have been given financial assessment form but if SS haven’t confirmed what care they are looking at do we complete it or not. Funny thing is the form is thick A4 booklet and the envelope is lightweight A5🤔😁. In the booklet there is a box to tick for help to apply for AA etc so will be ticking that. !

Hi can I join? I have a post about my mum. She has got hydrocephalus. Totally misunderstands what's going on, and with my sibling in happy denial. I trying to start lpa but the forms are tricky for a dyslexic and dispite asking, repeatedly for help citing my spelling no help has materialised from anyone. I'm.going to try to the health lpa tomorrow. It looks like mum will refuse a spinal tap therefore treatment. Sibling isn't up to speed or on the same page and feel like there's not much point and I've failed before even starting. I feel like no one but me even cares. Or I'm being dramatic and this is a non issue. I don't know what to do or think anymore.

@WorriedAboutMum2023 have you spoken to Age UK. ILs found them very helpful.