Cockroach Cafe 🪳Autumn 2022 🪳

@PermanentTemporary I hope things settle soon and you and she are at peace.

I hope I might be admitted to the cafe.

My dad is 87 and currently staying in the cottage next door to me, supposedly for a few months. He is aware that he can't remember anything he didn't write down, but is still able to whizz through the Daily Telegraph crossword. I cook for him every evening and shop for him. I'm now having to pick up more of his life admin. My not-so-dear sister is a conspiracy theorist, narcissistic covid denying stirrer who lives abroad. She thinks because she phones him daily that she is a loving kind daughter. She has done zero grunt work in the last 3 years. However, she sees fit to criticise anything I do eg DF will ask for fish & chips for dinner so we all have it & he raves about how delicious it is. "D"Sis moans at me for feeding him unhealthy crap. He's 87 FFS. He drinks vodka & gin like it's going out of fashion. Why shouldn't he eat what he wants? I have 2 adult DDs at uni whom DF can't wait to see. I also work P/T and have a DH who went through all this with his DM a decade ago.

Dad is not really ready for residential care but he needs rather more support than I can manage alongside my work. When either of the DDs is here, things are much easier. I suppose the only solution for me is to drop more hours, but this will have a massive impact on my pension and quality of life as I do enjoy my work. DF is very generous, but I do want financial security. His parents lived to be 90 & 91. My DM died 25 years ago so DF has been alone all that time. He has a lot of friends back home which is 230 miles away, and not exactly easy to pop back to. I drive him as he can't manage the train or coach. He can and still does drive but not that distance.

Not sure why I typed the essay but I would like to be around people in a similar position.

Lightup they do it on purpose. Mum's discharge letter, recommending one carer visit a day when I had to put her in a home, said that I live with her, which I don't.

I am shocked they got away with that when someone needs oxygen though. How is he feeling?

Permanent um. Oh. No offence to your mum, who I know you have said is lovely. Reminds me of my dad. I wish I had spent less time there in his final months. I hope you get a chance to do nice normal things.

Ended up on the phone to the emergency duty team. They agree it's an unsafe discharge but nothing they could do in the middle of the night as no one available (so what's the point of an emergency duty team then?)
They have as a 'huge favour' added dad to mum's care visit, they didn't even know he'd been discharged.
His discharge letter states something on it that is actually totally incorrect, so we now have to get that changed as well
More phone calls today by the looks of things

@Lightuptheroom that's shocking but sadly incredibly common these days. At least there is re-enablement in place even if twice a day. I would chase social services up about the referral to see if more help is available.

@PermanentTemporary it's a rollercoaster ride, isn't it? Up and down. Pace yourself, and make sure you're eating and drinking.

Mum has perked up but sounds very chesty still. I think we're in for a long vigil.

It blows my mind how unaware the staff are of multiple caring responsibilities. One was slightly 'isn't your brother flying over' until I pointed out that his wife is seriously ill too. I've told them in the past that both my sister and I are single parents and that I have frail in-laws as well but none of it has ever seemed to stick. Oh well.

Ooh thats bad @Lightuptheroom. I'm sorry to say it but he probably had a 'good enough' day and they took a punt. Bed pressure is so bad they would send people out on a slide out of the window if they could right now. Has the GP had any info?

Lightup so how is your dad? Did they explain why they went back on the oxygen?

My dad has been in hospital for 2 weeks. They diagnosed fibrotic lung disease and told us last weekend that he would need to be discharged on a home oxygen system which would need to be fitted into their home. Yesterday everything changed and he was discharged home today with nothing at all required. The discharge team say they've made a referral to social services who will do a welfare check.
My mum says they 'dumped him and ran'
She has 2 x re enablement visits a day which were organised when he was taken into hospital as she isn't coping at all.
We haven't been told any plans to add him to these visits or anything.

@PermanentTemporary thinking of you.🌺

Thank you all - I appreciate it very much. I know so many of you have been through this.

@Borntobeamum I feel the same. My dh's death was very violent and shocking and I'm glad I didn't see it. My df died after a short illness, we had seen him several times in hospital but none of us made it to the bedside in time at the end. So this is really a joy, to spend this peaceful open ended time with her. My only worry is that she somehow might recover. The nurses think it's the end. I do hope they're right.

PermanentTemporary - I sat with my DF for 10 days in hospital as I waited for his last breath.
I felt it was a privilege to be there and his passing was peaceful and very gentle.

Thinking of you and sending love x x

@PermanentTemporary sending you lots of love and thinking of you xx

@PermanentTemporary My thoughts are with you & your DM.

Thinking of you both @PermanentTemporary x

@PermanentTemporary sending you a big hug and strength for your vigil. 🌺🌺
you have fought so hard for her.

@PermanentTemporary thinking of you and your DM

Wishing you both peace @PermanentTemporary

@PermanentTemporary thinking of you and sending love Xxx

Thinking of you and your mum, PermanentTemporary

a friend lost his mum at the weekend - she was over 100. She had a doctor there, in her home, and was given oxygen and something to make her more comfortable. I have no idea how one makes that happen though, at some point I will have to find out.

Oh@PermanentTemporary, sending a 🤗 for you and wishing your DM a peaceful rest.

I'm finally sitting at what I devoutly hope will be my Mum's deathbed in her nursing home. All peaceful and playing carols very quietly. I feel very lucky. Only by screaming and crying on the phone was I able to stop them sending her to hospital- i couldn't bear the thought of it and it would have been futile. Not to mention hospitals at the moment are more than a bit stretched even before the nurse's strike. Maybe she will be free by the morning.

with care homes with our 3experience with mum the all singing all dancing most expensive posh ones are not always the best
We waited 4 months for a place at one for my mum with her dementia getting worse. She was then assessed by them and they refused to take her
I would say her dementia is moderate to severe they claimed they had no one like her there !!! They said she has seperation issues as she was calling out if she couldnt see someone didnt remember they were there
Didnt like pets so couldnt go there as they had dogs visiting but in my opinion they just dont take the dog in room she is in
Also apparently because once a year ago she clawed at her face she has mental health issues!!
she is very gentle and living and not violent or aggitated in any way can barely walk so will hardly be going anywhere
At this push home dementia patients are upstairs though they claimed they came down sometimes to join in activities but I wonder how often
We have also heard that there are no council beds in these homes when money runs out so if you the family cant pay the full top up I would suspect you wouldnt be able to stay they wouldnt admit this
Shame on them as this is a dementia care home an old peoples home and a nursing care home with spa room hairdressers cinema room lots of activities etc but they wouldnt take my mum who has mixed dementia quite why I'm still figuring out just said she wasnt a good fit and they had no one like that!!!
Yet the older cheaper scruffier care home took her no hesitation. She has been there a month so far no problems and they seem tobe dealing with her fine she is clean loved well fed and cared for
So yes please beware of these posher homes as that was our experience I think the word care was missing out of the equation sadly

@Badger1970 what a roller coaster. Only one that mostly drops downwards or sickening jolts sideways😣i remember you crying with relief when he was admitted. Try to let the tears flow when they ring. Let them know what this burden is like.

@chesterelly1 that sounds so hopeful. Fingers crossed for a place.

@EmmaAgain22 so true. I can't face the idea of years or even months but DM has already been in this home over a year. We were told in the early days she would almost certainly die by last April. I was convinced she wouldn't see this Christmas but now she probably will. It's very hard, for her and us.

Badger I can only empathise. But honestly, I feel every word you said. My dad wasn't a difficult patient. But the rest, I totally get. It's very odd being resentful when someone you love is dying. I wish I'd been around less, that's one piece of advice I do have.

ironically, after my post yesterday saying mum thinks she hasn't got long, today she seems very different. I think one of the worst things is not knowing if you're trying to plan for ten days or ten years.

@chesterelly1 On care homes it is a leap of faith. It's also about making the least bad decision as well. With all the ones I've experienced, there's been a six week 'getting to know you/ us' clause where both parties can approve each other. So if it's not the best fit, you can easily move him. But it sounds very positive and won't come to that. The most expensive is very often not the best.
It's just so tiring when you are running to stay still and being pulled in every direction.
@Badger1970 I agree about the next 48hrs. Leave him to it while you get catch up. He's safe and being cared. Looking positively he's frail so there's a limit to the chaos he can cause. Don't get too worried that he won't find a home. A nursing home will take him although it won't necessarily be cheap. Care home professionals have seen all sorts of behaviour caused by being frightened and lack of control. They will rally round you, especially if you are up front about his challenges, and face it with black humour. When the roller coaster is going full spin in the wrong direction, black humour is the way to go, it replenishes your teflon coating that has been scraped away with over use.