Cockroach Cafe 🪳Autumn 2022 🪳

Mum finally left hospital yesterday and has gone to a home. Dad says he feels that he's betrayed her, but he's not in the best of health and can no longer care for her at home. It took the inevitable fall and hospital trip for him to eventually realise this. So we start a new chapter and will see what the future brings. To all those caring, please remember to look after yourselves as well, easier said than done I know.

thank you all so much for understanding

long boring post alert...

I actually went to sleep after posting. By the time I woke up, my sister had rung from the train journey to tell mum this is all terrible. I was a bit sus that sister wanted to call me yesterday so she didn't get stuck here - but mum has said freely that she herself asked my sister to ring and said to me "does it really bother you that much to do the journey? You were coming tomorrow anyway".

FFS. It's two hours door to door on public transport.

Some poor soul ended their life on the track today so I can't go home now without a lot of problems. It has been decided I will go home on Boxing Day and we have put off visitors saying I'm ill...which is a fair assessment at the mo.

mum is looking very cross.

Then when I get home, sis is back the following day and will do a social visit at some point in the week but I'm hoping to keep away.

The muddle is partly that I grew up here, and the bit of my social life that's not lost to lockdown is here, so if I stay in my area, I have no friends to see. I've always been happy to stay here.

I am also meant to restart looking for a flat in the New Year.

what we really need is someone who can be called at short notice to take the responsibility if mum has a dizzy spell or something. If there was an agency wanting a monthly fee for that, we'd happily pay.

mum had no issues showering, making her lunch etc. I understand that dizziness after a stroke made her panic but it's like she has no clue that the last few weeks have impacted us. Maybe, post-stroke, she doesn't have a clue?

It is relentless Emma but as others say, look after you. Give yourself the best Xmas present - announce you have flu- and take yourself off home with your phone switched off. Then surround yourself with things that cheer you up - like a cosy outfit and a candle bath. Good that you realise you can’t go on being fully attendant - that’s the first step in breaking the cycle.

@EmmaAgain22 which is the lesser of the two evils?

That's the best decision you can make right now.

Thanks everyone
my sister has gone, she's with friends for xmas

I am borderline hysterical

mum is perfectly fine

I am thinking to go home, she can tell the other visitors I've got flu or something. Not sure what to do. If she isn't well over Xmas, I literally can't get here, so she will spoil Xmas for a couple of friends, one of whom will probably just drive to get me anyway.

also, frankly, I'm shattered, I can't keep to-ing and froing. It also might be better if she sees what a state I'm in.

@EmmaAgain22 I used to work in a nursing home and families were only ever really called when something of an emergency happened or the GP had had to come in. Some families phoned daily, others came in once a month and didn't want to know. I'm pretty sure that you could specify only to contact you in an emergency -which a dizzy turn certainly isn't!

It's relentless, isn't it? I think with my Dad I ended up feeling that my sister and I were just enabling his madness. Perhaps you and your sister both need to back off to a small degree and let your Mum realise that she's not managing..... hard as that is.

@EmmaAgain22 sounds like you need to see your own GP and have a break. Your sister may need to manage for a while on her own. Would she follow a request to only contact you if it was a life threatening situation? Otherwise a temporary block or turn off the phone.

The only person whose happiness you are responsible for in this life is your own. Occasionally we all have to find our inner selfish bitch, say enough, and find our sanity again. Best wishes.

my mum is in a care home early days but I only get a call if they have had to call dr or district nurse out . They do call with a monthly update though.
Most things they have seen before and become very adept at knowing what to do in all manner of situations
I got a call yesterday to say mum had the beginning of a bed sore and they had called nurse out and they told me extra baths and turning her every hour
All was in hand but just updating me
Agree with what others have said they dont call for minor things

Thanks

oof, I feel like I'm heading for a breakdown. I don't know what to do with myself.

Emma I don’t think the care home will overburden you with calls. Tbh I only got a call if the Dr has been called or DM had a fall or they needed my permission for flu/ Covid jab. It could go several months with no calls.

PermanentTemporary thank you, that's worth knowing.

Perhaps it depends on the place, I've heard a few people say they got calls for everything.

@EmmaAgain22 I wouldn't expect a care home to ring you for known frequent events, no. At least not if they've been discussed and a plan agreed. And they wouldn't expect you to necessarily do anything about them, either.

Not much use if she won't contemplate going into one. But worth thinking about.

So sorry to hear what you are all going through. No wise words but lots of sympathy. Please try and get some sort of break, even a few hours. 🌺🌺

Sorry to post without replying to others

another late call to mum's as she was having a funny turn and my sister didn't know what to do. Well, that and mum asked her to call me.

so here I am, mum is fine. By the time I got here, sis had given her dinner, and she was fine! Sis had to take her to the loo as she was so wobbly. But yes...fine now.

I'm exhausted and I just don't know what to do.

my sister thinks encourage her to care home - but they will call us for funny turns and dizzy episodes too won't they?

there is no way mum will go to a home and I can see why. But how much of this can we cope with?

I can't cope. This is ridiculous. I only went home on Tuesday.

Anyway, I'll be there for Christmas Eve. I thought I might take some knitting. If Mum is awake she might like to watch me and feel the wool. Maybe not, I'm terrible at knitting and she was top notch!

So many of us on this journey with our elders. My mum is stable ish thank you @OnthePiste. I went back to work a week ago (to find utter chaos after 2 days off, which is just starting to come under control by doing 3 extra hours a day - nobody's irreplaceable but if there's noone at all left to replace you, it is a bit difficult). The home say she is sleeping a lot more which is a strong indicator to me that we are still firmly heading towards end of life, even if it's weeks away. Having finally bullied the GP into crossing 'antibiotics as needed' off the drug chart, her next infection might be her last. I just don't understand why it is so hard to stop treating at this stage. I would at im stony hearted but I'm not. I'm just like my mum and we are really close. She was ready to die over a year ago. I just couldn't get anyone to believe me.

I managed to speak to a Dr in the hospice today. They agreed that Dad has declined rapidly in the last 48 hours and they've also agreed to give us an extra week before deciding on a move to a nursing home, as they want to try some other medication. They still can't confirm a time scale, they said it could be days, it could be many weeks. I've expressed my unhappiness at least, and they're going to leave the decision to the Consultant to make. I feel a little easier, but it's horrid seeing Dad like this. I've got a sore throat and headache tonight, and am praying it's not a cold as I can't bear the thought of not seeing him

The consultant at the hospital called me again today re DM after her broken hip and subsequent pneumonia. The antibiotics worked but he thinks she is possibly at or going towards end of life. She is refusing to eat, delirious most of the time, sleeping a lot. I am going in everyday and sometimes she recognises me sometimes she doesn't. The physios have been trying to get her to sit up but she gets so distressed that they have to give up. She just lies there, saying help me and muttering to herself. I honestly cannot believe how much she has declined. Doc doesn't think there is anything they can do so wants to discharge her back to care home. They are not sure they can cope with her needs of this level so she is staying in hospital until next week when CH manager can come in and see her. She may have to go to a nursing home if they think it's more suitable which is even more unsettling for her.

@PermanentTemporary hows things with your mum? @Badger1970 I hope your dad is as comfortable as possible.

Cockroach good wishes to everyone else.

My son and daughter are going to visit her instead of me, just in case DH develops symptoms as well.

@funnelfan My mum went into the rehab unit while they waited for an increased care package from two visits to four but while she was there it was apparent that she wouldn't cope even with four visits and my support.

She can’t cope but then when you have a conversation with her about where she wants to live long term and about needing more care, we’re back to “i can manage” and ignoring me and avoiding the conversation. I have threatened to put “I said I could manage” on her gravestone!! Was it you who said on another thread today that you’re not bothered about managing, you’re trying to avoid a fuck up that you’ll have to clear up? Today I’m right there.

funnel what a mare.

agree she should go in a home, funding is the thing though. If she's self funding, do as you please. It's good she has said she can't cope.

Thanks @DahliaMacNamara , “putting the wind up” is exactly my state of mind! OT also said it would be unusual to recommend someone go from once daily care visits to residential care without trying the four times daily care at home first, which is another worrying statement.

Now we know a medical cause for mums issues, and know it’s never going to get better and in fact will get progressively worse, DB and I would rather make the leap now to get her somewhere settled, preferably near me so I can pop in daily. The four times daily carer visits in a house she don’t want the responsibly for is just a sticking player that will only last a couple of months. And of course more work for us as I live 100 miles away in one direction and DB 250 miles in the other direction. Sorry, ranting now.

Oh, that's crap for you and your mum, @IthinkIsawahairbrushbackthere . Will she know it's Christmas Day?
@funnelfan The OT here came to see the house and organised the minor physical alterations they thought MIL would need if she came home, but that was months ago. She's not going back home to live, ever. It put the wind up us at the time, though.