Cockroach cafe 🪳 Summer 2023 🪳

@EmmaEmerald - no, no bereavement. Cruse was piloting a pre-bereavement service for people who are in the position of grieving for someone who is still alive- as is the case with dementia sufferers. Two years on she is still with us. She has lost weight but still strong and very much alive, just not on the same planet as the rest of us.

Miss yes, it seems worse than ten years ago when now apparently everything is on the NHS system.

hairbrush oh dear. Yours collided with bereavement though which of course makes it worse.

I have been chatting with another "family" member today (not blood relative, but family to us). She made an interesting point, which was that not visiting mum for a couple of weeks might make sense. Her reasoning is, mum can't seem to take my problems seriously, so if the last image in her head is me rocking in a corner, that image needs to be embedded.

She has visited mum and said that mum did say she's sorry she upset me but there's a strong sense of "Emma will bounce back, she always does".

My doctor asked today if I was sure there's no cognitive impairment with mum. I'm sure there isn't. The only thing she forgets is what I've been through, or what suggestions I make that she ignores and then later asks for.

I think also if mum and sis get the calls about organising home care, they might realise how much hassle it is.

I presume we have to pay for someone to take over as mum's rep?

@EmmaEmerald About 6 - 9 months. It happened in June and other than visiting mum I didn't leave the house. Towards the end of the year I started going into town on a Saturday and Sunday to buy a newspaper and then I started to go out for coffee with a friend. At the same time I started to have counselling through Cruse. Two years on I am pretty much back to normal although I realise how much money we save when I don't wander round the shops!

No one seems to read hospital notes This seems to be the case with the notes of most patients. Doctors spend ages typing stuff into their screens but then the patient (or patients representitive) seems to have to spend ages repeating information everytime there's a new consultation. Discharge info never seems to get passed on to GPs or other relevant people. I thought we had "joined up systems" , but it was weeks & weeks before DM's GP got her discharge notes with new medication prescription info. DSis was phoning surgery every couple of days trying to get prescription for new tablets, but even taking a photocopy of discharge notes into surgery didn't work. Tablets still being issued wrong now - nearly 2 months after DM's discharge from hospital.

I don't know if info isn't being read, not being passed on, is getting lost in a black hole somewhere or what. The system is well and truly broken.

And, please excuse my rant here - all the time our energy suppliers (British Gas etc) are make mega profits which our pathetic government refuses to windfall tax, money that could go into going someway to fix that broken system.

Social services step in where someone has no one to do it, whether because there isn't anyone or no one agrees to do it.

what apologies if I missed it but have you spoken to Adult Social Care in your parents' area, or is your mum able to do that?
No one seems to read hospital notes, the discharge coordinator might have it right in front of them that your dad had to go straight back in.

hairbrush how long did it take you to recover from your breakdown?

General query to all - what happens if no one wants to take responsibility for an elderly person?

@WhatHaveIFound that seems a very sensible approach. 🤞

Thanks to all that replied to my morning post.

I have spoken to the discharge coordinator and told him that it was an unsafe discharge when they sent dad home on Saturday evening since he was only home for half an hour before he fell again.

I told that we will not accept him being discharged right now and that mum is not in a position to fill the gaps between care visits.

Now just hoping that he doesn't deteriorate any further before my sister is over on a planned visit next month.

I just want to endorse what @betterchange has said. When my dad who was DM's carer was diagnosed with cancer the hospital said that they would refer her to Social Services and I said that there was no need because I would take over. It was the biggest mistake of my life and thereafter I had to fight for every bit of help. After her admission to hospital two years ago a friend who was a veteran of caring for elderly relatives for many years told me that I should make it clear to the discharge team that I would no longer provide any personal care. That was the trigger for them to assess her properly and decide she actually needed 24 hour care.

@WhatHaveIFound do you think that would be a compromise that your DM could accept - she is not refusing to care but recognising her limits. It was eye opening for me to realise how much SS had relied on me "filling in the gaps".

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.

@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.

@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

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.

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 😥

@EmmaEmerald sleep, rest, and give yourself time.

@EmmaEmerald , sleep well, you deserve it!

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 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.

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?

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.

Thanks everyone
I am still exhausted.

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.

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