The Cockroach Cafe Mark 2 (general coping with oldies)

[yolofish]

Morning all! regulars or newbies, coping with your oldies is a frustrating, exhausting and difficult business however much we love them. The Cockroach Cafe is open to all, a place to vent, rant, ask questions, get advice, and hopefully laugh too.

For newbies: why cockroach? My 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. My ever helpful DB suggested cockroach, and it has become a toast on here. So cockroach mes amis/amies, and may you all live to fight another day.

yes autumn a horrible shock - but then it's done. Watching my mum's decline (and, tbf, having to support her through it) was pretty shit.

Hope you, and the readers and the lurkers are all doing ok. xx

yes yolo that sounds harsh doesn't it

but then compared to the

1. watching patient suffer through treatment knowing it's delaying inevitable

2. watching patient suffer through last resort stuff

3. knowledge that patient is slowly dying although doctors won't say

4. waiting for death

5. waiting for death

6. waiting for death....!

7. Death and the shock of relatives who never believed in death because doctors wouldn't say it - apparently this is quite common?

8. the aftermath

bloody hell, I don't know how anyone gets through it.

at the time I remember thinking, oh well, if it happens to mum, at least I can go home and be alone instead of having to look after another parent.

Hi,

Am delurking - reading this thread with interest as I have a father in his late 70’s who is gradually becoming more inward looking and losing the ability to grasp the parts of my life that he doesn’t see (ie how busy and tired I am).

This: Death and the shock of relatives who never believed in death because doctors wouldn't say it - apparently this is quite common?
I experienced this when my mother died many years ago. It was terrifying as we were caring for her at home, and had no idea what to do when her breathing changed - cpr etc. Felt so out of control. The docs didn’t even spell out that she was dying of cancer, so when her gp said a post mortem wasn’t needed I thought he must be covering something up. Now, being older and in the cold light of day it was obvious, but much harder to see when you’re in the thick of it and have no one to help you understand and cope with someone dying at home.

Mascarpone "The docs didn’t even spell out that she was dying of cancer, so when her gp said a post mortem wasn’t needed I thought he must be covering something up"

gosh, you poor thing.

in our case, we did know he was ill but there was an MDT team in charge and there was conflict. I suppose it's possible some thought he was dying, some didn't, but they then concluded they ought not to say anything. Who knows?

I did specifically ask them, when he had death rattle, and one doctor said to me crossly "that's not death rattle". Meanwhile, I was apologising to other patients on dad's ward because it was distressing for them to have him in their midst. They were all terribly nice about it, but they were visibly upset.

You say your father is visibly looking inward. I definitely sense this with my mother. She clearly now asks questions out of politeness. I don't quite know how to handle it.

mascarpone I first had cancer (melanoma) in 1986. They never ever said the word to me - I knew of course - but only found it written down when someone left my medical notes with me while in hospital for something else.

I think things have moved on since then, DH was diagnosed 2018 and they were pretty blunt from the start. I think that's better.

But to have actually not known is pretty mindblowing for you.

Re the 'inward looking' thing - DM did this, I see it as part of their world becoming smaller, their friends are dying, they are less physically fit and the tech world is harder to cope with. Pass me that pillow someone!!

It didn’t help that the cancer didn’t show up on my mothers scans. When we questioned this with the registrars they shrugged and said it “must be microscopic spread”, which meant nothing to us (this was in the days before I had a smart phone and google on tap).

The tech world, omg. I’ve realised that my father can’t distinguish between an easy tech issue (how to forward an email) and a difficult specialist problem (fixing drivers or reinstalling a program or operating system). Because to him, it’s all hard! I now mostly say “I don’t know” if it’s anything other than straightforward as it’s just not worth my sanity otherwise. Have never forgotten the sky remotes - he had two remotes but neither changed the volume. I spent ages on trying to sort it, eventually got volume working on the non-sky remote. Cue much moaning and complaining that the sky remote volume didn’t work, on and on, little remarks the next time I visited. I am of course supposed to be an IT help desk mixed with a Sky engineer, just because I was born after 1970. I think it does us both a favour to say “I don’t know”, then he seeks out someone external to fix it where the complicated dynamic doesn’t exist.

He had a pre op for a knee replacement last week. Unexpected - he was there for an outpatient appointment and they tacked it onto this. I’ve drummed it into him - tell the hospital you have no help and live on your own (true). and you might get some post op care. Of course when it comes to it he says to them “I managed last time” and similar. But he didn’t manage on his own, we were there running around getting groceries and ordering aids from Amazon.

Do you think if I phone the gp that would help get him some support? I have filled out the forms to give the gp surgery permission to speak to me. He wouldn’t be unwilling, he’s not even stubborn really, he’s just clueless on how busy our lives our.

Mascarpone “ I now mostly say “I don’t know” if it’s anything other than straightforward as it’s just not worth my sanity otherwise”

Same here. Unfortunately my mum knows me too well, so there have been some issues where she’s been suspicious and realised I probably can give it a bash. But I figure, if she realises I’m avoiding it to save my sanity, that’s not a bad thing.

mascarpone yes I would phone the GP and explain - you might have to make a phone appt for a consultation, but every time you have to flag your concerns, or else you will become the default carer.

Mascarpone we cross posted before, sorry

I’d contact the GP.

Also, it might be worth contacting Adult Social Care to ask what post op help there might be in his area?

Mascarpone even if gp wont talk to you directly for patient confidentiality reasons it's still important to get your concerns on record.

Second autumn's idea about contacting adult social care too.

@Mascarponeandwine Is there a social worker attached to your dad's GP surgery? We have one and she is the one person who I feel actually listens. When they tried to discharge my mum without reablement she called the discharge nurse and told her in no uncertain terms that mum was not to come home without support.

Thank you. I think gp will talk to me if I phone - my father signed some forms which give me permission to speak to the practice on his behalf.

Last time he was in hospital I thought they’d arrange the 6 week re-enablement package (as he lives on his own). But, nothing. Don’t know if this was a result of what he may have said to them, or just hospital cuts / incompetence. I never saw a doctor, as i work ft so was not there at ward round time, and no one from the hospital ever contacted me. As far as I know, they might simply discharge people who have no means of family or other support at all?

Mascarpone they have to ensure 'safe discharge' which means putting a care package in place (which may well not be good enough...)

If the hospital just simply want to discharge him (because they need the bed) you can call them out on 'unsafe discharge' UNLESS you are sure they have put plans in place.

I'm so sorry, it's a bloody awful time and you have to be hard as nails, because of course you want him home - but if it's not safe, then he'll be back in again.

Mascarpone “ As far as I know, they might simply discharge people who have no means of family or other support at all?”

Yes and it can be complicated when the patient tells them “I have support” which is sounds like your dad might do. If he tells them that, and seems capable of getting home and letting himself in with keys...they’ll just send him off. So best to anticipate this before it happens.

Sadly it happens even when people have no support. Dad sent me round the hospital looking for a social worker one day because the man in the opposite bed was crying when they said they were discharging him and said he had no help at all. I found one and it got sorted in that they said they put a care package in place, hopefully they were telling the truth!

Oh autumn well done you.

It breaks my heart when I think of elderly people who dont have someone to fight their case.

And actually, even if you do fight their cause it's fucking hard!

DB worked for the NHS for 42 years as a mental health nurse. He knows his way round the system inside and out and backwards too, but my god we still had to fight. Both of us are white, educated, articulate, middle-class so with every possible advantage going.

It was still an uphill struggle every way you look at it.

yolo it’s my dad we should credit

Though tbh it’s lucky he had his hearing aid switched on when he heard this chap pleading not to be discharged. The hospital was so noisy, dad switched his hearing aid off a fair bit.

autumn no it's credit to you for getting it sorted. Take it where it's due girl!

Hearing aids... we spent a ridiculous amount of time trying to get through on the phone to tell the staff that mum's hearing aid batteries were in the box on her table. Why they couldn't look I dont know, but she was stone deaf, must have been terrifying for her. I cant actually think about it...

Sorry yolo

Didn’t mean to be triggering

How are the cats? I’m still dreaming of a future life when I can have one. Or two....

no worries autumn. It just pissed me off thinking about how such a stupidly easy thing to sort seemed to be so impossible...

Mogs are well thank you! Fat Stanley is fatter than ever. Psychopathic Sootie is mad as fuck. Mum's cat Willis is the best cat in the world actually - and very clever - but SycoSootie is a mean nasty bully!

Cats are fab, you should def get 2.

I didn’t know Sootie was a psychopath 😱

Sootie... how long have you got? He is charming, loving, likes to sit on my arms while I type. Then the devil gets into him and he lashes out - like seriously vicious. Once whacked DD2 on the face narrowly missing her eye, completely out of nowhere.

The dog describes Sootie as "a black panther wot been tumbledried too hot and shrunk. Wiv eyes like a gremlin." And she's right!

We all love him, but he's scary. Very handsome though, coal black, lithe, gorgeous green eyes. Just fucking psychopathic!!

disclaimer most cats are very very nice. Sootie is a fuckwit.

Okay, that’s a bit scary....

Most cats are not like SootieMalootie. Most cats are pretty charming and easy going (if you get moggies, which is what we've always had).

Sootie is just special.

Also, there is a thing that black cats are difficult to rehome, people are superstitious about them, and also in this insta day and age, they are harder to get good photos of (seriously, that's a real reason people give to rescue centres!)