🪳 Cockroach Café Spring 2024 🪳 🪳

@Patsy7299 you could always repeat the phrase that people often say to their children.

"Unless you have something nice/helpful to say, keep it to yourself'

It is a bit rich to pass judgement when they visit and help so little.

@Patsy7299 how dare they - I'm so angry for you!
Nan has taken a turn for the worse - she's on oxygen and fluids. I guess that means she won't be coming home 😞 I don't know if this is the end - I hope it is, sorry if that makes me sound bad. I don't want her to suffer like this

@Patsy7299 I suspect my typing fingers might be tempted by a certain letter formation, ie F U C K O F F before hitting the block button in those circumstances . Seriously, fuck them. Staying away to allow for a settling in period is actually really hard, for those who actually do significant amounts of visiting and caring.

It’s a minefield! People have no idea the stress is brings.

I know, I’m judged no matter what I do.

And I support the blocking too - they are not rational!

@Choconuttolata that sounds like hopefully the medical professionals will steer social care in the right direction 🤞

@Patsy7299 I’m also staying away to allow settling in but it feels like everything is happening at once with referrals and social care and funding now so I’m hoping that isn’t unsettling.

Wow. No words! How dare they.

They sure did!

"When you have visited every day for four years like me and do all the caring for Mum feel free to give me your opinion. All the time you visit once a month I suggest you keep your opinions to yourself"

Did they actually use the words "you're a disgrace"?

You are spot on, gonna hit that block button now!

Anyone who called me a disgrace in that situation would find themselves blocked from further text messages. How dare they.

Thanks all. I decided not to go for a few days and surprise surprise, one of my family who visits once a month has text me saying I’m a disgrace and if I wasn’t going tell her and she will visit. Tried to explain it’s about letting her settle in but to no avail.

Good news @Nodancingshoes I hope the plan for getting her home goes smoothly.

In news here Aunt's GP has said in his opinion she does not have the capacity to keep herself safe. What that means in terms of mental capacity and being able to organise care for her I have no idea and the social worker was also confused. Waiting for them to discuss that one between themselves and come back to me.

Dare I say, a little better today. The discharge team rang today to check her care plan so hopefully there's some light at the end of the tunnel. I told her off (gently) and said she must try to be a bit more positive so that they let her go home. To give her credit, she DID try. Once she's home, we have carers x 4 per day coming in. I don't know how long she has got left but she wants to be home so that's what we will do. Hope everyone is ok xxx

How is she today, @Nodancingshoes?

I know they are busy @Nodancingshoes but if using the commode is distressing her that much is there no way that they could wheel her into the toilet on a wheelchair and then assist her to transfer to the toilet and then back again?

@BishyBarnyBee absolutely know how that feels! I'm officially at the end of my tether. Nan is getting in an absolute state over using the commode - crying, begging me to help her - until I'm crying too. As soon as the nurses get her back in the chair, she's ok again. I'm due back there at 5 - I'm dreading it

We've found this with MIL - she gets in such a state, everyone around her is utterly drained, then she forgets how bad it was and acts like everything is fine.

It's very hard because when she's in good form she is fiercely independent but then it all falls apart and everyone around her has to pick up the pieces.

Very fond of her but she is blooming hard work!

It is good to see caring highlighted and I noticed it was the most read article last night so it's clearly a hot topic. But yes, typical man to get a book deal out of it - I laughed at your comment BishyBarnyBee

I haven't posted for a while but have had a bad night/morning with my DM who has Parkinson's and I suspect dementia. She refused to go to her last appointment with the Parkinson's clinic and was in pain last night in her legs, I took her to A&E but then my sister brought her home saying there was no point , they would be there for hours, then again this morning she was crying with pain. My dad gave her codeine (eventually) but she was begging me to help her this morning, sobbing, and then an hour or so later they both brush it all off and act like there's nothing to worry about.

I'm going to call the clinic tomorrow and ask what they can do about the pain and where can we take her when she's in pain that isn't A&E. I mentioned getting more support for them somehow and dad says yes, but it costs money. Money is not an issue for them, but spending it is. It's really frustrating, and then my sister messages the groupchat to say 'how is mum today?' Er, why not drop in and find out?

It does predominantly fall to women that is true @BishyBarnyBee.

Although in my husbands case he moved back in with his Mum when she became very unwell and his male and female siblings refused to help in any way. He also does a lot of care for my Dad to help me.

On the other hand my brother is almost completely absent and does nothing to help and my Uncle couldn't get rid of my Granny fast enough once she started needing help and stopped being useful for childcare.

I think whatever sex or age they are highlighting the issues of carers in a national newspaper when it is an issue that affects and will affect so many is a good thing.

Fair point and good to hear.

@BishyBarnyBee I take your point (and I’m a full on fight the patriarchy Hag) but at least he’s bringing to light the complex issues of caring.

I’m also incredibly beyond lucky to have supportive siblings and in-laws and the men have stepped up on all fronts, including personal care.

Thanks for sharing the article @Choconuttolata - really resonates and full of truth.

Yes, DF is certainly a 6 but at risk of becoming a 7 - it sounds like your aunt is there too. There were wildly different CFS numbers on each hospital discharge, which made me wonder how they determined the score as no one had asked family. I started researching the CFS and saw that family should be consulted in determining the score.

A wise person on these boards also shared the NICE guidelines about discharge / medical professionals determining needs and they were very illuminating about what should happen to the very frail person.