🪳 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.

Thanks for updating @Nodancingshoes and glad you’ve had some medical professionals talk with you - I hope there was talking and listening.

Hi all, hope you’re all well! I’ve managed to get my mum into a lovely care home that is spotless and staff very good. Unfortunately my mum hates it and is refusing point blank to engage with residents and activities and making me feel like worst daughter in the world every time I visit. She’s lovely to everyone else but thinks I’ve abandoned her. I’ve cared for my parents for 4 years until my dad passed last year and been there for my mum constantly. She doesn’t think anything is wrong with her even though she has dementia and huffs with me. I dread every visit but the guilt is also overwhelming 🥲 I have been visiting every day and doing all her laundry. I should probably visit less but the guilt is overwhelming 🤦‍♀️ sorry for the rant x

@Patsy7299 how far advanced is the dementia? Would she accept you telling her it's temporary while you get something sorted in her own home? I've seen that suggested in a dementia handbook that focused on minimising conflict by agreeing with the person as much as possible. So you might agree that it is an awful place and say that you'll get her out of there as soon as the builders have finished at hers.

The other thing is, we feel guilty if they are unhappy in the care home. But actually, the dementia probably means they would be unhappy at home. So you just have to remind yourself, this is the best thing for her and there is no other option. Sounds like you need to decide how often you can reasonably go and make up your mind to deal with the guilt. Is there someone who can support you and remind you you're doing the best you can?

It might be like a child at nursery - she might take a while to settle, and she might settle better if you are clear and not showing you feel bad.

Hugs to you, it is so hard.

Visiting less might be exactly what she needs. Leave her to settle and have chance to engage with the new people and environment.

@Patsy7299you need to look after yourself too - do you think every other day would feel ok?
I'm suitably exhausted - I've been going into hospital 3 times a day since Monday plus trying to hold a job down and manage some kind of home life. Tomorrow I'm only going to be able to go once and I am looking forward to the break.. I feel desperately sorry for my nan but I feel like I just can't listen to anymore of her pain and despair. The care she is getting varies day to day depending on who is on shift. Yesterday was good, today terrible. I'm concerned that they are not getting her up to walk to the toilet - they are just bringing the commode. She is able to walk with her frame and I'm worried she will lose the ability. There was NO ONE to talk to about anything today. I'm not very assertive and struggle with these kind of situations so that makes me feel abit useless.

@Nodancingshoes 3 times a day is gruelling. My mum went twice a day when my dad was in, and it was so hard on her. Please try and find a number of visits that is sustainable for you. We can't do this perfectly, she is lucky to have you and you have to protect your own health. It might be ok for a very short time but if it goes on, you need to manage your stress levels to be sure you can keep going.

@BishyBarnyBee I know - I can't carry on with 3 visits. My sister is home on Tuesday so we can share the load thank goodness

@noda

@Nodancingshoes that sounds exhausting going 3 times a day. I would be worrying too about her deconditioning if she is not doing as much walking however she may be more tired with an infection and conserving some energy by using a commode instead of walking may give her body more energy for recovery especially if she is eating less.

@Patsy7299 I think you have done the right thing, there was always going to be a period of adjustment and you were at burn out stage.

Things are bad with my Aunt, she has hardly eaten anything and has not drunk much at all since the social worker took in some shopping. She is having incontinence of both kinds but wandering around with nothing on in the house. GP not going in until Monday. I am hoping they see the truth as they all think she has capacity and she has only agreed to someone bringing in her shopping weekly. I think I have found someone who can do that finally, but she needs so much more help, she just won't agree to it. Social care just want to wash their hands of the whole situation.

At least my Dad has seen the light and agreed to some changes as he is determined not to end up in the same state with no dignity.

@Nodancingshoes it’s so hard to watch them in hospital where they are being cared for but it in a very ‘here and now’ way, no time for things like keeping their mobility. DF was encouraged not to walk to the toilet because he’d take so long (getting there and in there) that it was easier for the staff and other patients on the ward to clean him up.

I also found there was no one to talk to on the ward, even on days where there were multiple or long visits we didn’t seem to have contact with the doctors face to face - except for best interests chat (in a corridor!). Members of the Multi-Disciplinary Team did call family several times though, so we knew the medical opinion was 24 hour care.

@Patsy7299 our last hospital experience led us to moving DF into a lovely home too but we’re also going through the restlessness now.

I think I’m going to take the advice here and visit less - after work is not a good time. The home have plans to do activities and it might mean DF settles more into life there.

I have plenty to do for DF that is not with DF, sorting out the disaster that is his house and that cannot wait.

@Choconuttolata there are so many safe-guarding risks I hope your aunt’s GP can advocate for her needs with social care.

It’s so hard when they use the shield of ‘is x accepting of care?’ and ‘x seems to have capacity to make their own decisions’ when there is in the moment capacity but not a true understanding of how to keep themselves safe.

Has anyone talked to family about the clinical frailty scale?

https://www.theguardian.com/lifeandstyle/article/2024/jul/06/reluctant-carer-to-redundant-carer

Saw this today and thought it might resonate for some.

No one has spoken about clinical frailty at all @FiniteSagacity, she would be a 6, moderately frail at the moment, but if they keep leaving it she could very well end up worse.

I just thought, bloody typical of a man to make a book deal out of something that is everyday life for so many women!

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.

@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.

Fair point and good to hear.

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.

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?

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!

@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

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?

How is she today, @Nodancingshoes?

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

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.

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.