🪳 Cockroach Café Spring 2024 🪳 🪳

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

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.

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

Saw this today and thought it might resonate for some.

@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?

@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.

@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.

@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

@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.

@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.

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

@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.

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

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

I managed to talk to a doctor and the rehab team today so I feel better.

I'm thinking of you Nodancingshoes, and your nan. My dad said that everything tasted funny just before he died.
Holding your Nan's hands is a lovely thing to do. If you think that it wouldn't upset her,you could rub some hand cream in,and do her nails. In the absence of being able to help in practical terms,it'd maybe help you feel like you are doing something for her,and would probably be comforting for her too.

MysterOfWomanY I saw my mum running around after her mum,and her mum making her life miserable. Both my sister and I were never close to our gran because of this. You are right,it doesn't only affect the person concerned,but those all around them too.

Read her notes.
Sorry, I had forgotten she is 99.
Could just be they are doing their best to keep her comfortable but don't have anything really to say, especially if they haven't suggested moving her?
With your DSis away, you are in a unique situation. Your DGM will be very grateful she has one of you close by. As Bishy suggests, holding hands is such a positive way to reassure.

I would not want to prolong her suffering. She is 99 and tells me daily she wants to die. They are keeping her in hospital until they can get her pain under control and clear an infection in her chest. I am finding it difficult to get much information out of them tbh - I have asked several times to speak to someone and they fob me off. Am I allowed to read her notes? Sorry, this is a new experience for me - she has lived independently and pretty healthily right up to now

I've witnessed places where they let nature take its course and don't push food. In DM's case however, she went from sleeping 20 hrs a day and weighing less than six stones, to being over 7 stones and lived a further eight years, albeit with very advanced dementia.
I know which route I'd prefer.

I'm not sure it's a conscious choice but in my experience, it's a natural part of the last stage of life. It's very hard for us to watch, as the instinct to nurture through feeding is so strong, but it happened with both my dad and my FIL.

My mum was trying to get cream down my dad for calories, but looking back, it didn't really help and could only ever have delayed the inevitable. With FIL, who had dementia, once MIL tried to accept it, it took an element of conflict out of the situation.

The one thing we agreed on with my dad was not to fit a PEG, as a colleague had regretted fitting one for her terminally ill husband. In some circumstances where recovery is possible it makes sense, but where the patient is pretty clearly in a rapid decline, it may cause more distress and just prolong the pain and discomfort.

Trying to keep her comfortable and reassure her might be the priority now? I found hands became very important at this stage, I have such strong memories of holding and stroking my dad's hands in hospital. Hugs to you going through this.

I wondered if anyone had any experience of their elderly person giving up eating almost completely? She hasn't been eating properly for months but since she's been in hospital, she's virtually eaten nothing. She is taking sips of water and tea. What will the hospital do? If anything! She says nothing tastes good but I also think she is trying to hasten dying.

@LittleMy77 gosh so sorry to hear this. I write details of all of my mother’s negative comments barriers she puts up simply to feel better after each interaction. It’s quite amazing as I’ve been doing this for over 12 months now and I’ve 2 full journals. They make interesting reading and at times entries are so ridiculous they veer between heartbreaking, frustrating, comically sad and baffling. That said I’m not dealing with a change of my mother’s character as some posters have to. She is simply an exaggerated version of how she has always behaved. Always knows better than everyone. Always puts barriers up even when helpful people try. It’s exhausting

@BlueLegume mum was like that, she refused to make / take any decisions then blamed everyone else if the smallest thing went wrong. It was incredibly frustrating and v stressful as you were always anticipating the fallout of everything

She died last year and dad is still here. He’s now delegating all responsibility for anything legal and admin to us, but he’s still competent so we can’t invoke POA etc. The decisions he is making aren’t great and he’s obsessed on stuff we have no control over - ie the stupidity and length probate is taking for mums share of the state, which none of us can change

@Nodancingshoes thinking of you, having been where you are. Really hoping you have tea and your own needs are also being met ☕️ (appreciate you must be so sleep deprived though).

Peehaps the junior docs strike has perhaps caused things to be slowed down (no political point being made—I have junior doc child). Where my mum is now, there was a flurry of meetings this am catching everyone up

This is what life was like for my Mum, us useless idle teens at home while her own mum and aunties were dropping around her. She had a breakdown.
This is why I never had my own children. Didn't want to risk being stuck in the same jam.