Cockroach cafe Winter 2025

There's some pretty compelling science that the first phase is the laying down of amyloid plaque in the neocortex, and of course as it's a relatively big space, it depends where in the neocortex the plaques are being deposited. So it can be memory, especially "working memory", or motor skills, or cognition or the visual/auditory centres (for hallucinations).

The problem is that we don't always pick up symptoms and even when we do, many people don't get a PET scan for amyloid to calculate progression of disease, they just get a diagnosis based on symptoms or a CT (which can't see amyloid, so will only show general brain shrinkage in later stages)

Thanks @funnelfanI am due to see the doctor next Monday morning so I can ask then. I did hope the HRT kicking in might help the anxiety but it hasn’t helped much yet. DH is finishing work at the end of the year and he is keen to take on the bulk of the calls and visits to reduce the impact on me, plus I will be starting a part time job in February.

@rookiemere i had CBT through nhs taking therapies that really helped deal with the catastrophising. There was a bit of a wait but worth it. Ultimately the main thing to really damp down the anxiety itself was medication, but the CBT techniques help spot when the feelings start and stop them spiralling out of control so they’re a bit more manageable. And I procrastinate for less time.

@bigbootsweather i was caught out by mums dementia not presenting in the way that I thought dementia presented. I always remember a poster at the GP that said “forgetting where you parked the car = normal, forgetting the colour of your car = see your GP”. Mum started forgetting where she parked her car regularly but could tell you the make, model, colour, and number plate, fine. She started talking about “my dementia” when she started losing the ability to work the tv remote, microwave, washing machine and I used to jolly her along saying she was just getting on a bit because her mother was exactly the same. But she was right and I was wrong, and in hindsight grandma probably had dementia too, but luckily for her she broke her hip and followed the hospitalisation/ infection/ pneumonia path to a relatively quick and peaceful end. In mum’s case the doctors say her head scans show signs compatible with vascular dementia, but she also has signs and symptoms that fit well with Parkinson’s and/or Lewy Body Dementia. Apparently you can only get a definitive diagnosis post-mortem, so she’s treated as if she has Parkinson’s and the medication really helps.

Just been catching up. So much resonates.
I’ve realised that while I can accept DP’s are co dependant with all that entails I can navigate that with low contact and just keeping in touch with DM via text (she has speech issues after brain bleed) and visiting every six weeks (plus DM birthday and Xmas). The one that brings the drama is DSis.

I was definitely enmeshed in it for years (knew no better) but having stepped back out of it for last few years it’s become so obvious that I’m astonished I never saw it previously.

anyway. Now I’m persona non grata again as I didn’t agree to ‘babysit’ DF later this week (came home yesterday after post op fall on Fri) but am planning to go up Friday as its first free day I’ve got.

@StillNiceCardiganyou have to prioritise your job for sure.

I was dreading phoning my DPs, sure that yesterday’s shopping would be wrong and DF would have driven off in a temper ( he isn’t allowed to drive) and crashed into a wall. Instead he was very pleasant, enquired after me - I can’t actually reply to that one so it’s best not to - then DS which is safer ground and politely requested some more orange juice ( I am certain he has many cartons in the house so I want to check before buying loads).
Unfortunately talking to them now brings me such anxiety that it took about 2 hours of procrastination to get to that stage, plus I got the day of my haircut wrong. I hope my policy of phoning them and letting their calls go to voicemail helps.

On the dementia front, there are many presentations. It seems both of my DPs probably have it despite normal CT scans. DF is more classic with memory loss and confusion but DM is still mostly cognitively there but seems to have reverted to a more childish behaviour so loss of empathy, very intransigent and very one tracked in her thoughts. I make the mistake of treating her like she is fully aware, but really I am pretty sure she isn’t.

Has a stressful start to the day. MIL usually goes to a dayclub on a tuesday and when we went round she was in her dressing gown and was "ill". So now we have not eating properly, not drinking water, not moving much so her mobility has got worse and no dayclub.

She did admit she wasn't ill but we can't make her go. All this because she's stressed about Christmas.

I ended up being late signing on for work and I only started this job a few weeks ago.

@bigbootsweather there are different types of dementia with different impacts. Frontal temporal lobe dementia is one that often presents with language difficulties.

Thanks @GnomeDePlume The more I hear of other people's experiences the more convinced I am that some form of dementia is the problem for mum. I'm sure she's been covering up her symptoms for longer than I thought. It's harder because in many ways she doesn't present in a way that seems like 'classic' dementia- she has trouble remembering words and gets names wrong, but doesn't forget where she's put things (no more than the rest of us anyway!), what she's done, who people are etc. It's much more the processing of information (eg. she knows she needs to lock the door, but can't work out how to do it) and fear (auditory hallucinations/believing that someone is in the house etc) that is causing her problems at this stage.

Thanks @countrygirl99 I'd not thought about dementia preventing judgement of where things are in this way (it seems obvious now you've said it). That could explain why mum's 'not quite a fall' incidents always happen in the early hours, when she's probably tired and not at her best. It's also that time when the worst of her auditory hallucinations/paranoia happens so would make sense that the 2 are linked. It must be really frightening for her.

@bigbootsweather my mum's falls are dementia related. She doesn't always recognise or correctly judge changes in level/uneven ground so trips frequently over steps/kerbs/ the edge of the patio etc.

Yes @roundaboutthehillsareshiningthis is so true. A large part of the reason I find caring for my DPs is so hard is I don’t actually like my DF. He did his best as a parent but it wasn’t terribly good, I mean it wasn’t bad either but he always put himself first.
Over the years I have managed it by having a very superficial relationship with him but now, thrust into spending so much time having to placate and pacify him, it’s awful and I feel shaken after pretty much every visit.
Someone possibly @GnomeDePlumesaid that dementia amplifies the existing personality- or something like that - and it’s hard for me to separate and blame the disease when he’s always been a selfish sod.
Luckily DH is immune and because he is male DF is nicer to him, ditto DS.

One thing I've noticed from being a step away emotionally from my situation is the amount of trauma the actual "blood family" are carrying and how their (failure in) dealing with the trauma informs how they're behaving in dealing with situations now. Not just trauma from the current situation, but having seen it spiral down for decades.

@funnelfan Yes, I was not happy. But I know that if I react as I'd like to with DB he just plays the victim and mum gets really upset. In the past I'd have said her upset is on him but given mum's confusion I know I need to keep calm (another challenge!). I'm sure his partner thinks he's busy helping mum and being son of the year- but she also seems to think he can do no wrong.

@GnomeDePlume I'm sorry to hear your mum had a bad fall. If you don't mind me asking, with your mum were you told that the issues with balance were part of the dementia? Some things I've read online seem to suggest that but at the moment mum's GP seems to be treating them as separate issues, so mum's hoping that they'll find an issue with blood pressure etc that they medicate or that the right physio/tools she'll be fine. My fear is that it is part of the dementia and as such will get worse anyway. I'm expecting that the Memory Clinic will be able to give us better advice but in the meantime I'm trying to manage her expectations a bit. I think a care home is inevitable and I'd really like to make plans before things get really bad- particularly because I know she's got enough savings to have to be self funding but they won't last long at all so the house will have to be sold, which won't be easy as it's in an odd location and (although she would say otherwise) any buyer would want to do quite a bit of work on it. Currently she and DB won't even consider that as an option.

...........he just has the annoying male habit of “not noticing” things need doing without someone else pointing it out

For "someone else" read "any woman" within a mile of the thing that needs doing.

Why are men wired so badly?

@bigbootsweather I’d have gone ballistic if I’d driven a couple of hours to find DB making himself comfortable and not doing anything useful. Especially if he’s actively making the situation more difficult than it needs to be. And then send him home for his wife to presumably do the same ear bashing for checking out of family/parental responsibilities

i do have to do all the mental load/thinking for DM, but DB is actually good at all the hands on stuff. He has cleaned up several “code browns” without fuss and said his kids had done worse. He’ll happy work through a list of things to do, he just has the annoying male habit of “not noticing” things need doing without someone else pointing it out.

@rookiemere he is. Periodically I start to feel sorry for him, thinking perhaps he really is just worried about his mum and trying to do what he thinks is best, however misguided. Then he acts like a selfish teenager and I remember why I only really interact with him for mum's care.

Goldenballs is still trying to issue orders from on high. My boundaries now have 10 foot walls 😁

@bigbootsweatherI have never met your DB but he sounds insufferable.

So hallelujah I managed to speak to one of DFs doctors this morning. Unfortunately it wasn’t good news - the memory clinic wait list is many months - but then maybe that is good news as apparently DF managed to answer the rudimentary memory questions asked by the doctor who apparently visited on Friday. Maybe it’s a good thing - if he can scrape his way past some basic questions now maybe if we’re still in the same situation in some months time, I am pretty sure he won’t pass it then, plus he knows he isn’t allowed to drive until the assessment has taken place so we can perhaps spirit the car away. Most importantly the doctor was absolutely lovely, her DPs live about 5 minutes from us so she knows all about the hours drive to get there, and when I raised my concerns about food hygiene and DMs care she said that I should step back and allow the issues to happen.

DPs food delivery arrived today. I was expecting an irate call because I haven’t ordered three of everything, and DH had kindly offered to shield the call but instead it’s been crickets which is odd. I am sure I will pay for it soon, but I am determined to keep my equilibrium as much as possible.

@roundaboutthehillsareshiningI am glad the trip is over and no longer looming over you.
@GnomeDePlumeisn’t it sad when we are happy to merely have the tedious administration and work to do, but it’s the personalities and the deep rooted family experiences that makes this so hard.

Happy December all.
@NDornotND as well as noting on the contract that you are signing as LPoA I would also explain this to the care home manager before you sign, then send and e-mail or letter to the care home manager specifically stating that you will be signing the contract on behalf of Elderly Relative and not in a personal capacity, so as discussed you do not take any personal responsibility for payment of fees or other costs. That way no one can claim any misunderstanding of what you've agreed to- I'm a big believer in belt and braces when it comes to being in the hook for huge expenses!

Nothing has really moved on with my Mum. Brother is still determined that mum must be cared for by family and promising that she won't ever need to move out of her own home. She is still waiting for an appointment with the Memory Clinic but she's increasingly hearing things (usually people in the house, or voices saying nasty things about her) and getting worried about things that aren't real. She's also regularly having what I think can be best described as 'almost falls'. It's always early in the morning (usually before 6am), when she gets up to go to the loo, and she says she feels dizzy so she gets on the floor because she's scared of falling. Then she can't get up so she calls me and Brother. Sometimes she says she has fallen, or 'slipped' but there is never any sign of injury (and she bruises very easily so I would expect to see something if she actually fell). I don't think she's knowingly making it up but it does tend to happen when she's been worried about things or hasn't had much company so I can't help thinking at some level she persuades herself she's fallen so that someone will come running regardless of the time or anything else that's happening. She usually calls Brother first as he lives closer, so he goes to her. Then she calls me so I will talk to her whist she waits for Brother to arrive. There's then a discussion about which of us will stay with her for the rest of the day and a few days of extra attention. I'm really torn because I know she's frightened and, even if she's looking for attention in the moment, she really does believe she's in danger of a bad fall. However, I feel that dropping everything to run over is enabling her (and Brother) to get the company/help she evidently needs without having to address the difficult question of whether she should be living alone any more.

She's also getting increasingly stressed if she can't contact me by phone immediately. If I don't answer, and don't call her back within a few minutes she's started calling friends and relatives telling them that she needs to speak to me and I won't take her call/she's worried that there's a problem with her phone that means she can't call me. So I've come out of work meetings to find loads of missed calls and texts from relatives asking me to call Mum urgently, or had to pull over when I'm driving because the phone's ringing constantly, only to find that Mum just wanted a chat. I've tried to explain to friends and relatives what's happening but I know she'll have called them in distress and the probably assume it's something really urgent and I've been ignoring her calls for days.

I've told Brother that I think we really need to consider whether she needs a different sort of living arrangement if she is ending up having to be picked up off the floor so often but he is of the opinion that there must be some physical cause and we just need to find it and get her he right medication then she'll be fine again.

I went over on Saturday to do some cleaning for her, empty her bin and take her some shopping she'd asked for (which essentially takes all day, because it's a couple of hours drive each way on top of the time spent with her) only to find Brother watching YouTube videos in bed in her spare room. Apparently he was tired and needed a break from parenting, so I'm starting to see why he's so opposed to Mum living elsewhere.

Sorry, that's become a mammoth post but it's so helpful to get it all out, and I'm trying to avoid all my conversations with DH and the DC revolving around what's happening with Mum (for my own sanity- they are very supportive)

Thank you, this sounds wise.

@NDornotND As I recall (and I'm away from home, so I can't access the paperwork to check), I was advised to specify on the contract that I was signing as LPoA on behalf of the elderly person, and that I did not accept personal responsibility for the fees. I believe I made a notation next to that clause, which was initialled by myself and the care home representative, then added a clause at the signature indicating I was signing as LPoA and that the contract should be read as applying to <Elderly relative> rather than myself.