🪳 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.

Welcome @lucycoco and @FiveFoxes, plenty of tea/gin/chocolate/cake in the corner, make yourselves at home.

I have to say @lucycoco I think you are enormously brave for moving your mum to another country to live with you and I cross all my digits that it works out for you.

Welcome @lucycoco I must say that I identify with all the moaning. The ironic thing is that the younger version of my mother really hated it when people moaned and complained all the time and went to great lengths to avoid such people.

I think about life expectancy as well. DM is 88 and DF is 95; both still mobile, just, and living at home in a 4 bed semi with a stair lift and walk in shower. It’s the inevitable decline I dread. Should think about healthspan I suppose not lifespan. I hope the end is quick when it comes. I know my DF thinks the same.

My mum comes from.a very long lived family and is 86 with alzheimer's that seems to be progressing fairly slowly and is physically quite fit. Currently at the needs a lot of support and sorting out of disasters caused because she thinks she can still do stuff rather than personal care. I can easily imagine her still living at home in her 90s with me, by then in my 70s, been driven insane.

My Mum's Mum lived to 100 ... gulp!!! (Although she didn't have dementia or leukemia).

Our generation of parents are living longer due to better medical care and health services.

My mother s parents had both passed away by the time she was 34.
My dad s parents had both passed away by the time he was 44.
Neither of them did any caring even though female members of both families did help out but they all were living independently, help was not to the extent that a lot of us are doing today.

@FiveFoxes & @lucycoco you both are in tough situations. Just mind yourselves xxx

MIL is 103. Blind, deaf, hallucinating, suffering from vascular dementia and desperately unhappy. She could go on like this for years as there’s nothing physically wrong with her that might lead to her death. She started going seriously downhill five years ago and has just been moved into a care home. I really think DH and BIL (both in their seventies) will die before she does, and I have visions of being on my own deathbed and worrying about leaving DD to cope with her. I’m afraid I have very bad dead parent envy.

I have to force myself not to think about it too much. I’m 48, mum is 84 and the thought of another 10 or more years being hamstrung by caring responsibilities that get steadily more complex is terrifying.

After what we went through with Dad I think a repeat performance would finish me off.

Had a call out from the alarm company at 4am this morning to say it had activated but they couldn’t get a response. Went round and she was fast asleep with her head laying on the bloody wristband.

I sat in (via teams) on DST meeting today for MiL at nursing home. In essence SS hoping to get full NHS funding. 20 years ago she may not have lived until 91, or if she had might never have been sent home …. Instead was sent home with multiple issues before SS said she needed better care and nursing care. Which one would think is same as hospital care in many ways. Each area gets a score from no needs to severe needs and those scores and how they interact determines who pays (in her case they take all her income and a chunk of her savings) which is affordable …

what was interesting was needs that for anyone having to care for a relative would feel that most of her needs are high. But most were classed as moderate. She can’t feed herself without help, she can’t walk, she needs full personal care, has nights without sleeping, skin cancer, kidney disease, depression, blood pressure issues, double incontinent - all considered moderate needs!! Not sure what that would mean if she was at home?

she weighs 4 stone less than 2 years ago, but because they give her supplements she is putting on a bit of weight - so moderate to low nutrition needs? She may live a year or more with no cognition, and SS services likely paying the extra £5k pcm and only DH sees her most weeks - not that she knows 🙁

I have to say the care is great but …. In the meantime her grandchildren are paying for transport and prescriptions and student debt etc

I posted a while ago about how my mum was determinedly ploughing through the proceeds of her downsizing and I was a bit concerned about future care needs. I was robustly told, by about 90% of posters, that it was outrageous of me to judge her, I was only worried about her inheritance, and we should all live for the day and let the state pay for our future care needs. I think most people have no idea what future care needs can involve. She has started saying things like "I wouldn't have let your grandad go into care" and is also convinced that it was the move to a care home which killed my dad - though in fact he was only moved there for respite because he was so far beyond what anyone could manage at home. So I think she is assuming her daughters will look after her. My heart goes out to those of you in the middle of the intense phase of caring. We have experience of it with both dads and it was exhausting and distressing.

I am trying very hard to not cross that bridge before we come to it with my mum, and am pleased she is active and enjoying life - and getting a lot of pleasure from spending her downsizing money. But it is a nagging doubt.

The bigger nagging doubt about MIL is perhaps slightly eased by the fact she did the memory assessment (alone) and reported back that she could do it all, though slowly. So I think the assumption is that she is acting eccentrically with very high anxiety, but has not got dementia. A diagnosis would have prompted discussions about the next phase, but no diagnosis means we are back to watch and wait and deal with the regular crises.

Huge thanks, all, for the kind replies and understanding, and I have a great deal of sympathy for many of the situations I'm reading in this thread.

Having lost a father to what I now see as a fairly "straightforward" experience of cancer, then a brother to several awful years of cruel illness with a fight for care provision, I think that dreading a long and messy (emotional, logistical, as well as physical!) decline of a loved one is totally understandable!

@Juneday your post reminded me of what a friend of mine recently discovered, that objectively severe elements of her disabled daughter's condition were being classed as 'moderate' in the care provision guidelines. No one wants this care but it is desperately necessary and the care assessment guidelines can be pretty sickening.

I can't catch up with everything I have missed lately so just jumping back in where we are. I have given up on my old laptop and have finally given in and logged in to Mumsnet on this one which is supposed to be for study.

DM is still going - she seems to have a chest infection every month or so but rallies and comes back to us.

@lucycoco i really feel for those going through DST will disabled and ill younger people. The guy chairing MIL assessment more or less every case will become an argument and he is running out of steam to argue, so tends to be cautious and I felt there were more low moderates than I would have thought, SS argued one and I think I added context that helped. Apparently any past issues don’t count, so that refusing meds on a number of ocassions didn’t count as currently uncooperative, but then nursing staff did admit it often takes two attempts. So that may have marked her up 🤔. If we know she has a history of not taking or refusing, surely it matters! But the nursing home don’t want to look negligent and I think it was only me that brought it up. They denied it had ever been a problem, but it had because she got admitted to hospital with a chest infection after refusing meds. Also DH told them about her feinting and history of it. I suspect she will get extra nursing funding.

she is not a home owner so they take all her income and some savings which goes nowhere near covering the costs. If she owned her home she would have been forced to sell last year to pay the £6k ish pcm. But they can’t do this if there is a tenant in common spouse usually, living in the home.

care home rang today to ask permission to give latest Covid booster. Lots around atm.

Hi, newbie, fell down the rabbit hole today & ended up here. Lost my mum Sept 2019 to alzheimers at 91 & felt incredibly alone in her last 4 years battling hospitals, carers, care home & mum herself. My heart goes out to you all facing this now with your oldies & the support on here is lovely to see. Still trying to make sense of things I did & didn’t do, whether I could have done more, if what I did was enough.
I hold on to the lucid moments of humour that mum still had & try to remember them & not the awful things.
I once posted my distress at the start of it all around 2015 on another well known forum & got majorly slammed & shamed under the ‘she looked after you as a baby it’s your turn to do all that now’. So I did it all myself & felt so alone.

That’s sad @WannaSweetie - are you still processing it all? You’ll find plenty of people here who understand.
I still have both parents living in their own home, but lost my maternal aunt to dementia in 2019. Wouldn’t wish it on anyone and if you haven’t seen it, you don’t know the demands it imposes. It’s very hard on those who have to care and decide.

Thanks for your understanding @WannaSweetie - We do our best in unfortunate situations and sometimes people don't appreciate that.

I’ve just found you remarkable people.
DM, 80s, undiagnosed dementia, plenty of medical conditions. Been screaming into a vacuum since covid about her decline in cognitive function, memory and mobility. I’m 200 miles away with a job and family. She has been assessed as no mental capacity. Has SW. No POA, can’t even discuss it. I tell myself it’s the dementia but it’s so very hard. Just tells me she doesn’t understand why she can’t live at home on her own and because she can’t understand that, in her head it must be my fault. I’m telling lies and making stuff up and spreading lies about her.

Fist bump @Squirrels81 - also screaming into the void having seen the decline in my DF, undiagnosed dementia, plenty of other health conditions and it’s all my fault he can’t live independently any more.

Have some tea and cake (or the top shelf is there if you need something a little stronger).

@BishyBarnyBee Sounds like that thread was full of misinformation. It is so frustrating to know your destiny but have your hands tied. Also difficult to have two separate struggles in different geographical locations. While they are both independent to a certain extent, take as much time away from them as you can, and prioritise you I say.

Thank you. That's very much my thinking, though sadly it appears MIL didn't pass the memory test at all, she just thought she did. So she has been recalled and there will be further investigations. I feel very sad, I have been pretty sure this was where it was heading but no pleasure at all in it being proved to be true.

This group was a lifeline to me when DM was still at home with me. DM now has no memory and very little language but she was only in the home "because I was too selfish to look after her myself" and anyway she didn't need looking after because she wanted to do things for herself but I wouldn't let her!

But that is in the past and now I have nothing but love and compassion for the shell of my mum that remains, sleeping in the armchair or the wheelchair, unable even to wipe her nose.

My heart goes out to all of you screaming for support. It was a long fight to get carers for DM and even after she was assessed as needing them it took 6 months for a company to be able to provide support.

This is such a common attitude but so misplaced.
a) I chose to have Dd at a time of life when it suited me. I had months of pregnancy to prepare for it, emotionally and financially. I had nothing with my mum, it just happened
b) society is queuing up to help new parents. Nobody wants to help you with your elderly relatives
c) I had a year off work to look after a baby. It was the only thing I had to do. I have to do ParentCare between my full time job, a teenager, trying to maintain a marriage.
d) looking after a 7lb baby is absolutely nothing like a 15 stone immobile 80year old with their own mind that doesn't want to do what you want them to

All of that @StiffyByngsDogBartholomew and I would add that babies generally don’t have bank accounts and pensions that are entrusted to you, let alone own houses to mantain and other legal affairs to manage. After all, they generally live with you and not at a separate property in a different street/suburb/city/country.