Cockroach cafe 🪳 Summer 2023 🪳

[MereDintofPandiculation]

Welcome! I’ve done a really good clean of the place overnight, and brought in sweet peas, and raspberries from the garden to go with the scones and clotted cream.

Come in when you want to share good news, or to rant, or to ask a small question that doesn't warrant its own thread. Or just to hang out with others who understand what you're going through.

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. So 🪳 mes amis/amies, and may you all live to fight another day.

I'm probably still feeling the effects of 5mg diazepam for sleep but wondering if I should pop to mum's later ...as I type I realise I shouldn't.

if she gets into the care home today, that's also walkable so I'd go there to hug her. I get how awful it must be but what's the point of keeping her at home when it breaks me?

@EmmaEmerald if she wanted to end things I would have thought she would have opted not to go to hospital on Saturday. She was in a a bad way and deteriorating quickly with pneumonia. I think sometimes she's just contrary to have some control. She has a habit of choosing a meal she usually enjoys and then pushing it away making very loud yuck noises or randomly deciding she's not going to take one of her tablets for a few days. When you are hemiplegic and can't talk, read or write there are very few ways you can control your life.

country my experience with pneumonia was painful and unpleasant. So accepting treatment for that, but not the heart pills, would make sense to me.

Stay away ♥ You're burnt out, and it's become clear to those around you. Let her go into care, or at least respite. It won't be awful, and anyway why should your life be awful purely to keep her happy.

If anything, respite for a few weeks will give you the chance to take a breath, redraw your boundaries and set up carers, cleaners, meal delivery and whatever else is needed to make it manageable.

Have you heard the phrase: you don't have to set yourself on fire to keep others warm?

Sunshine yes, I heard that phrase here, it's very good.

I suppose I'll be called on for some kind of emergency soon enough.

Hope everyone has a better day today
Yesterday wasn't a good day at all
Working today so phone will be off for a bit

Sending gentle hugs, Emma Emerald. Please look after yourself.

It's only been about 12 years since I first tried to push the idea. Now an appropriate professional has advised similar, it's a Good Idea. How come ideas are only Good Ones when suggested by other people, even though I may have been suggesting the Exact Same Thing over and over for some time? It’s the aged person’s equivalent of things becoming a good idea when they’ve regurgitated them to you 3 weeks later as their own idea.

Look on the bright side - you laid the groundwork for the idea to be accepted

It’s allegedly less painful for the elderly. I guess similarly to the way they can get a UTI and not know

I'm probably still feeling the effects of 5mg diazepam for sleep but wondering if I should pop to mum's later ...as I type I realise I shouldn't. Yes, you shouldn’t.

Please take care of yourself @EmmaEmerald! Don't go over, rest up and take things easy. Let other people deal with whatever crisis occurs.

Please @EmmaEmerald stay at home and don't even take calls.
You'll be sucked back in and you'll have a complete breakdown.
You're on the edge of one anyway. Listen to your body and rest.

Thanks everyone
I am still exhausted.

Emma I’d encourage to you to not even look on this thread if it reminds you of the situation and puts your head back in that space. (Which is why I’ve not tagged you because I don’t want you to get a notification if you’re not already here!). Try and get as complete a break as you can and wishing you lots of time to do whatever it is you need to recharge your batteries.

funnel that's very kind of you. I like to be here atm as I can't really tell anyone else. My boyfriend is annoyed at me, my best friend's mum is in hospital and she is having to manage work as well as visiting her mum.

I actually don't know what's happening today but I very much hope mum is being settled in the home as I type.

I did think about going for a walk but I'm too tired.

I hope others are doing okay today?

@EmmaEmerald keep resting and looking after yourself. When MiL went into home we were advised not to visit for several days so that she adjusted - that might best for you both. It is incredibly hard not to get angry and impossible not to get stressed - I likely drive friends and DH mad with my continued angst and moaning but also frustration at the whole system.

One time I was cleaning MiL kitchen and sorting out food etc but she just kept yelling for me - culminating in her telling me I was not a good DiL. I knew it was the dementia, but I answered back out of sheer frustration of it all.

We hope her place in the home becomes permanent - she is getting good care and they admit being a bit difficult 🤔 atm - but nothing they haven’t seen before and they ignore her when she shouts out, which I found so hard to do.

🤞 for you, try and focus on some plans for yourself.

Thank you June

I can't fathom doing that for an inlaw, I think you're amazing.

Mum went in the home this afternoon. My sister is now feeling furious about it all and said that mum didn't even mention that I'd completely broken down, it was the neighbour who told her.

Mum's got a friend visiting on Friday hopefully, I think the earliest I will go is Sunday.

I can mute my phone every night for four weeks! Amazing stuff.

@EmmaEmerald , sleep well, you deserve it!

@EmmaEmerald sleep, rest, and give yourself time.

Morning all. I wake with a feeling of dread today.

Dad is still in hospital but according to them he's ready for discharge once an increased care package is in place. Unfortunately they fail to appreciate that even with 4/5 visits a day he still needs the bathroom in between and is incapable of transferring between bed/chair to wheelchair to get there, nor is mum strong enough to help him.

He's now been waiting over 20 weeks for the continence team to even consider fitting a full time catheter. No idea if/when they'll see him.

Right now I feel he'll be better moving into the care home where he went for respite as that way at least he'll be looked after. The latest was the hospital have lost his bottom teeth so he's having problems eating.

I could just cry at the lack of care 😥

@WhatHaveIFound

As hard as it is , have you told them you are offering zero help as you see it as an unsafe discharge ?
I can't see a recent post of yours but does he have someone at home to also care for him , are they fully able to do so , capable and willing ?
Often on here you read of an elderly has been discharged after a lengthy hospital stay , only to be readmitted within hours / days when it becomes obvious / or because of a fall that being sent home was not the ideal the hospital / adult social care had imagined.

@RuthTopp my mum is at home but is physically not strong enough to help dad onto the toilet or pick him up when he falls. They have to get the falls team out. I work full time, often overseas and live an hour away.

The trouble is there's nothing physically wrong with him now. He had Urosepsis and was treated with IV antibiotics but I believe that this is now clear. However on Tuesday they weren't able to take a blood pressure reading.

After 16 years with Parkinson's I feel it's now the beginning of the end. I just want to make sure he has a comfortable ending.

I've left a message for the hospital discharge coordinator and will have to see where we go from here.

@WhatHaveIFound my father has Parkinson's, though was only diagnosed three years ago at the age of 85. The combination of prior kyphosis and being so old means that it's progressed very rapidly. He's gone from being able to walk reasonably well to totally bedbound and immobile in that time. He now hallucinates continually and is very anxious, only alleviated by morphine. They are fortunate to be able to pay for care but he has two full-time live-in carers so that money will run out fast.

It's just shit, it really is. He just lies there in an unnatural shape having crazy visions. The GP is constantly giving him antibiotics and when I questioned the wisdom of this, she seemed to accuse me of wanting him dead. Which I don't, but I don't want him 'living' like this either.

As you know, Parkinson's isn't in itself fatal. He has got a DNR and I spoke to a palliative care nurse from a charity and she said it would be sensible to help him make a distinction between oral and iv antibiotics. In one of his lucid moments we asked him whether he wanted to go back into hospital if necessary. He was adamant that he didn't so it's all over his notes now that it's all about being comfortable at hone. As a result, he's having loads of morphine. Still feel he could go on for ages in this twilight state.

Sorry, I don't know what the point of this is, I just wanted wanted to share with fellow Parkinson's parent person.

NC for this, though I do appear under my real name further up the thread.

Basically, the NHS and social care are stretched way beyond any reasonable limits and therefore have to use any short cuts that seem to present themselves, even if they result in dead ends or labyrinthine messes. Hence the number of folk who are discharged with a completely inadequate "care package", having spent so long in hospital prior to this that they are completely deconditioned and institutionalised.

It's clearly better in many, many ways for people to be in a home environment rather than hospital but only if that is safe for them.

I was a GP and I'm sorry to say that my mantra has, for some years, been - DON'T OFFER ANY TOP UP CARE. If the family seem even vaguely willing (never mind capable), that offers the services the short cut that they need to send someone home. Never mind that it's not safe, that the loved ones (who often WANT to care) are physically unable to do so, that the discharge will fail and the person will be readmitted very soon. Discharging them clears the hospital bed and that's the target.

You - we - everyone - have to tell the services that we CANNOT and WILL NOT be able to offer any level of top-up care. (Of course you can cross your fingers behind your back as you do so, knowing that you will do what you can - but it's important that you don't admit to that).

It's horrendous that we have to do this. I am aghast at having to advise this. I am beyond shocked that the govt allows this to happen. I am deeply saddened for all the HCPs and carers who try so hard to do the best for their patients/clients and can't achieve this through lack of money/staff/resources.

But that's the way it is, and so we have to play the game according to the rules that are thrust upon us.