🪳 🪳 🪳 Cockroach Café Late Summer 2024

God youre so right. Its so tough. 😔

@Projectme what have you told the SW about you being there? At the moment you're not a priority as you've dropped
everything to be around so they don't need to act on it. Tomorrow will turn into we can't do anything as it's the weekend, to the end of next week and before you know it you've been there for a fortnight.

Depends on your circs but if you tell them you've got a child who needs to be got home from school tomorrow and can't be alone, your job only allows one day of emergency leave, your partner relies on you being there etc etc and that you have to go home then they'll have to get on with sorting something out.

Good luck! This is the really tough bit!!

@Projectme unfirtunstely because you’ve dropped everything to be there she’s no longer an emergency to SS as ‘the family have rallied’. The only way to force it is to tell them you have had to go home (maybe watch from a safe distance?), but there’s still no guarantee. This is why the NI raise was necessary, but people don’t want to pay tax.

Thank you. My DF doesn’t seem to be very aware of where things are heading. He is very with it mentally but is either not taking it in or is trying to protect DM and I as he won’t discuss it. I’m just hoping it is quick for everyone’s sake. His breathing is laboured because of the fluid on his lungs from the heart failure but I have no idea how long this could take. It’s awful.

@MysterOfwomanY, thinking of you.

Hi all...back again...I don't know where to start really but here goes...
Dad (81) carer for mum (78) who is type 1 diabetic. She has 4 x day carers. He has had to go to hospital after he collapsed. Being treated for gastroenteritis but BP is really low so they want to keep him in until its stable. No idea if that's 1 day, 3 days, 5 days...

I have dropped everything and stayed with mum. Spoke to social worker who said she will raise an emergency request for respite care so mum can go into a care home for a week or 2. She's told me this is unlikely to happen tmrw or in time for the weekend.

So my options are
A) stay with mum til dad gets home, or
B) take her to local hospital, admit her as a 'social admission' and effectively abandon her there.

I'm in utter shock. I shouldn't be as I've heard SS horror stories but when you aren't emotionally involved, you just tend to forget them. It's horrifying that if I choose to walk away, she'll end up in hospital and will likely stay there, bed blocking. Given she picked up an infection last time she was in hospital that seeded in her spine causing her legs to pack up so she's bed bound etc, I don't see her ever coming out of hospital plus being type 1 diabetic, I can't ask neighbours or family members to look after mum for a few hours because inevitably, she'll need food and her injection which they can't do.

I'm just beside myself with WTAF thoughts atm.

Anyone know if there is anything else I can do?

@Earlydarkdays it's a strange strange time. Sounds like it won't be long for your poor DF if his breathing is changing.

Will ring herself later to see how the new live in carer is bedding in.

@Earlydarkdays and @MysterOfwomanY you are in my thoughts today.

Been with DF in his "normal" home (i.e. where he lived before moving in with me). We arrived on Friday - DD2 came on Saturday, stayed over, went to a football match with me, my aunt and young cousin then got the train back on Sunday. We left DF with my uncle and they had a lovely time reminiscing so everyone was happy. Done some pottering, DF has seen his "wonderful" podiatrist who has him "walking on air". Yesterday DD1 came up by train so I met her in the city centre. We came back to DF's flat where she helped with some jobs then she & I met another cousin at another football match in the evening. We had a great time, walked in just after 11:30 as DF was heading to bed. This morning, DD1 has gone back to uni and DF and I are heading off shortly to look at venues for his 90th birthday party next year. Hopefully home tomorrow to rest!

@Earlydarkdays

@Earlydarkdays wishing you the strength you need, and sending a big hug.

We’ve been told there is nothing more that can be done for DF and palliative care are now involved. A waiting game now really. It’s so hard trying to sit with him as his breathing is very laboured but he is very aware of what of going ok. I keep hoping he’ll just slip away in his sleep soon but another morning comes round and no change.

Sending love to anyone else at this stage. It’s wretched.

@PermanentTemporary nobody is close enough to visit tbh.

In the Costa again at the mo.

When we got herself to the door of his side room today, I peeked through the glass panels at the top and went,
oh, he's asleep!
thinking, or, er..., um...

But he was just asleep.

Says nil by mouth on the door and there was a bag of the little sponge on a stick mouth swabs with a cup of water on his bed table.

Suspect it's just a waiting game now. Would love to be wrong, but...

Solidarity and hugs to all the daughters of the participants of Trip Week. It’s not funny, but there’s definitely something in the air this week.

@MysterOfwomanY I’m sorry you’re facing such a difficult time. I hope he’s comfortable. Big squishy hug to you.

Sitting in the hospital's Costa.

Have left herself at himself's bedside and our instructions are to retrieve her when we've had our coffee.

Poor man has been put in a side room on his own, and yes I do know what this suggests, and yes I do understand why the hospital made that choice - having seen him just now 😥.

Have just rung one of the main family and given her an update to pass on to people.

At least they're cognitively all there (as I told the care coordinator). Believe me I see what other Bad Daughters go through and thank all the gods every day for that!

@PermanentTemporary I recognise the challenge of the person refusing whatever anyone else suggests… but lacking capability to execute (or even articulate) their own plan.

See also, saying yes to any appointment… currently wrestling with NHS appointment that I can’t take DF to, that I’m not sure what it is for and suspect it might not be needed and that DF will not be able to articulate what he needs to.

Dm also fell out of bed at the nursing home this week... all fine. My only worry is if the new nursing home start thinking they should Do Something about it.

I shudder at the thought of being back in the phase when DM had enough cognitive ability to refuse any plan we suggested, but not enough to carry out any plan of her own without help. Huge sympathies to all daughters (and sons) wrestling with that stage.

@ArabellaFishwife its not much of a life, is it?

@BlueLegume I think your mum trained my mum. She has no shame or limits to get her own way,

There's a lot of it about this week. FIL is also in hospital after a fall. As literally the only way to get him back into his house would be on a stretcher, I have no idea what will happen next.
The fall didn't cause any lasting injury. The problem is that he doesn't have the strength to walk. He's slow to process anything too complex, and is inclined to forget conversations. but is otherwise still in reasonable shape, cognitively speaking, in spite of signs of dementia. We'd literally just sorted private carers, and now, or at least for now, it seems that this would be grossly inadequate, given his current state of helplessness. He lives alone on the ground floor in a house he can't physically leave, but insists on remaining there, with his commode and zimmer. What a life..

@notcopingwellwithDMdementia @MysterOfwomanY sympathy for you both. This narrative of being ‘shouted at’ or ‘called out’ by others has to stop. Most of us are decent people trying to navigate impossible situations on top of our own lives. | am throwing in a curveball here following @notcopingwellwithDMdementia comments about the scans and MRI being normal. We had this with our mother. Last year, in fact exactly a year ago had to deal with our brother telling us in a very emotional way that our Mum ‘she’s ill’. We are very used to our mother’s manipulation and disagreed but we went along with his desire for, and I quote, ‘we just need a diagnosis’. I organised a private referral we had everything, scans, bloods you name it. All culminating in a 2 hour face to face with a really wonderful consultant who essentially sussed her out. Manipulator of the highest order. Act a bit confused and scare the children so they jump through any hoop however high that might be. She knew she had been rumbled. My point I suppose is and this may get me flamed. My mother knows enough about dementia etc to just chuck in some of the alarm bells so we panic and worry she cannot be alone. Sadly she has done things like this our whole life and our brother has been blind or naive to it. I’m writing this very carefully because I am aware it is very hard to articulate. Our mother might not be happy with how things have turned out but we have shown she is not ill she is just not happy and in turn is doing things to make us think she might be ill. I could write an essay on her shenanigans over the years where she has done this- it is incredibly distasteful for her to feign something like dementia. But then she has no shame. Good luck and sympathy to everyone involved with this difficult time.

Ah @MysterOfwomanY I feel your pain! DM has been given a place at a nice care home - she is being discharged from the hospital to the care home tomorrow.

Apparently, after 'a while' a social worker will visit to assess her to see if she might be able to go home or if she'll need care for the rest of her life. Social services are funding the care until this decision has been made.

In a way I'm hopeful that she can get over whatever has been causing this acute confusion - but apparently all of her scans including a brain MRI are normal. I was expecting them to say that her MRI was consistent with dementia but I have been told by the hospital that that isn't the case. In another way I hope she settles well in the care home and can stay so that she is looked after (and selfishly so that I don't need to be running around sorting everything out.) If she stays there then it will be a case of either selling or letting her house out and paying the care home fees.

I'm so tired of all this now.

I don't think anyone will shout at me (apart from DM) but I haven't got the energy to care if they do!

LUCKILY everyone else is way too far away!

@MysterOfwomanY there are many experts peering in from outside. They’re welcome to roll their sleeves up.

Yay and having put out a message to the wider family as I thought people would yell at me if I waited for things to get worse, someone read it, jumped to (the wrong) conclusions and yelled at me anyway. Oh well.

But people aren't always at their best in these situations so I just let it all roll off me. I'm sure I've done the same myself at some point!

...and good job they DO have money and capacity, because from the talk I had with social services just now everything is at capacity and waiting lists are huge. The SW had already spoken to herself and agreed a plan - I was just being updated.

The council could at least sort out urgent care for a few days to bridge to private care - they can do that - they won't need to hopefully.
The SW will talk to herself tomorrow and check though. It's himself who has (even) greater needs and he's in hospital now, so there's that.

And the social worker'll make himself's hospital discharge team aware of the situation. I have to admire the SW's optimism that he'll be coming out!

But, last time I thought this was it, and ... he perked up and was out the next day. So who knows!!

If he stays in, at least I now have a wheelchair for taking herself in to visit him. I was surprised how cheap they were.