Cockroach cafe 🪳 Spring 2022 🪳

Well, adult services have come up with 'brilliant idea' (apologies for sarcasm)! Why don't we ask my dad's GP to speak to him about the cancelled procedure and get it rescheduled... That was after I'd already told the social worker that GP had spoken to my dad and asked us to encourage him to attend the appointment... Sigh

DB1 arranged for mum to start going to a lunch club . She's been telling everyone how nice it is except she hasn't been yet! Today I phoned at lunchtime to make sure she was out but she answered her phone. Too busy cleaning out her kitchen cupboards, last week it was mowing the lawn. Then she tells me she's fed up and lonely🤷‍♀️

@OhPleaseJustLast that sounds familiar. When dad was in hospital they sometimes phoned mum, who has alzheimer's, instead of DB who was meant to be the contact. So mum eould phone us and tell us they'd phoned bit not said anything or some garbled nonsense and then get annoyed when DB phoned as they only wanted to speak to one family member a day.

@OhPleaseJustLast - it must be so stressful for you.
My dad had dementia and had lost most of his words. He died in hospital after a fall and I took some comfort from the thought that he didn't really have much to look forward to. Anyway, I wish you strength, whatever happens.

Ugh. Hospital communication is so frustrating! Half the time you can’t get through. When you do, they say they’ll ring back. Except they ring my mum, who doesn’t ask any of the right questions. They told her today that dad was ‘alert’ this afternoon. Turns out that means delirious but moving arms and legs. Which is not my definition of alert. Then, that he was going for another CT scan. Oh right, why’s that? They said yesterday it would be 10 days before they scanned again. No idea- she didn’t ask 🤦‍♀️

Eventually it transpired that this morning he was not ‘alert’, so had deteriorated, so they are scanning again. Quite what will happen then is anyone’s guess. My brother is going to the hospital so hopefully he will be able to give us some actual facts.

In the meantime, I rang the care home to ensure they were being kept informed, and they said oh yes, they’d spoken to the hospital more than once and were just waiting to find out what day this week he would be discharged. Had no idea he had a bleed on the brain. I could scream.

Certainly sounds it :(

He's out of hospital again now (and back in, and out in between!) Anyway, if I tried to take the slot I don't think she'd be very happy. Very occasionally when he's been in for a short overnight stay she hasn't checked the visiting times but weirdly didn't let me know in time so at least one of us could go and see him. But as soon as he got moved to a ward that allowed two visitors in a hospital that's much more difficult for me to get to she was desperate to have me and other relatives go. It all seems to be more about supporting her rather than people spending time with DF, but she's just so stressful to deal with. 😰

Yes, sadly, that's exactly what you have to do :(

Adult services have concluded parents are fine.. they have done referrals for day centre and care alarm. They feel dad may be better off paying for the day centre (so that'll be a no from him then) and dad doesn't feel he's being abused by DM (suspect as his hearing aids have packed up he's just not listening any more) So, we now we step back and watch DM decline mentally and DF decline physically whilst neither want to know the cause. Feels a bit like a race to the bottom.

Tell her its a new phone?

If she isn't visiting one day can't you book the slot?

Thank you. He wasn’t in the best state before the fall- he wasn’t happy at the care home and was wandering all night, his language had almost completely gone- there were words, in sentence form, but not the right words. I do feel that if this bleed doesn’t kill him, he’ll be going back to the home in a worse state again, and honestly, I don’t think any of us would want that.

There's still covid visiting rules here, when he was in he was allowed one visitor at a set time. I offered to go in myself but she claimed he didn't want people to see him falling sleep (which is nonsense because he falls asleep all the time and has done for the last couple of years, and also at one point we were getting messages when he did a poo so I don't think it's much to do with dignity either!).

The old phone idea is a good one. I suspect she would still phone my regular number if I didn't pick up though. Or my husband's mobile. But worth a shot.

How will she know of you visit if you don't tell her?

Can you give her a number to an old phone and use that to communicate with her?

You could check once a day or once every couple of days for texts etc?

@OhPleaseJustLast I know the feeling exactly. It's horrible watching them be in pain.

Popping up to say "hi", I've posted a couple of threads about my DM, who is hard work, and my DF who is very ill.

I had a checkup with a nurse yesterday and my blood pressure was really high.

DF got taken into hospital recently for a possible end of life scenario. He has stabilised now but DM has very quickly used this to get back into constant contact and trying to make everything as dramatic as possible and it just makes me stressed and ground down; last year I got put on antidepressants for months which had a big knock on effect on my physical health.

She sent a message at 8am on Sunday about a dead hedgehog in her garden. I've asked her to give me a break for a bit unless there's an actual emergency. I'd like to be around a bit more for my Dad but she wouldn't let me visit him in hospital by myself, and I need to sort my own health out first.

@OhPleaseJustLast I am really sorry. Mum had vascular dementia and a small bleed after a fall onto concrete (bad fall, broke her arm and two bones in her face). She was 88 at the time, if she'd been in her thirties they would have operated. She was unrecognisable in hospital, it was frightening to see the change in her. Why wasn't her husband visiting? She was going to ditch him, the loser. Well she could only have one visitor which was me and anyway, he'd been dead for twenty years. She did come back from that but I'll be honest, she wasn't the person that she was before.

That triggered the move to residential care, she had maybe seven good months after that. On one visit she said that she'd reached a stage in her life where she was really happy and had no worries and that is a memory that I treasure. At the time she fell I thought it would have been better if that had been the end but then she wouldn't have had those few good months surrounded by people and winning at bingo (still bright enough to realise that every table managed to come out winners by the end)

There is nothing you can do to fix this, nothing you can do to change the outcome. This is something you have no control over and that's why it is so stressful.

No, it's not x

I hope your dad passes peacefully and pain free xxxxxx

Ohpleasejustlast, I don't think it's really bad to say that you hope he has a massive stroke and goes quickly. I think it very hard to see to someone in bad health and needing a lot of care along with having no quality of life.
I have seen several people over the last few years getting different health conditions that were going to effect them physically, mentally and where they would be dead within a few years. Meanwhile family were trying to keep people at home for as long as possible and then trying to get suitable places for the person to move to when they needed a higher level of care.
It a very hard time for the patient and family. Some patients can have a total personality change and can lash out or be abusive. Along with this you can be dealing with family issues or with family members who will do as little as possible.
So no wonder your don't want Dad suffering at this stage.

My dad had a fall at the care home on Sunday and they took him to A&E to be on the safe side. In actual fact he turned out to have a large bleed on the brain. Just went to see him today and it was horrible. He was delirious, trying to take his clothes off and climb out of bed, only semi lucid. I don’t know if he knew we were there, but seem distressed. The hospital has put a DNR in place and said they won’t operate but also won’t give us a prognosis. The neurology department wants to wait 10 days before they scan again to see if the bleed has spread, but I don’t see how he can survive 10 days like this. Is an 80 year old with vascular dementia likely to recover from a brain bleed? What would ‘recovery’ even mean? Is it really bad that I hope he has a massive stroke and goes quickly? This is no way to live. My father in law died suddenly from cancer about 6 months ago and god, I know which way I’d choose if I had the choice.

Stepping back is wise I think (hard as it is)

Perhaps the neighbours might call the police if it gets bad?

DM is becoming very verbally abusive, switches very rapidly between normal conversation and extensive swearing at and about DF. We are stepping back as we have no consent to speak to GP etc so have no idea if there has been any tests recommended

Verbal abuse from your mum or dad?
Or both?
I hate to say it but sometimes you really have to step back and let the crisis happen I'm afraid :(

They've literally just had a care assessment done on Friday, I haven't heard anything from this yet. DM said that they are looking for a day centre for my DF to attend. I'm fully expecting him to decide he doesn't need to.
We've raised a safeguarding concern which is why they did the assessment. The verbal abuse is getting ridiculous and we have no way of knowing if something medical or phycological is causing it.

Can you contact adult social services?

We can't work out how, he's profoundly deaf, his hearing aids packed up yesterday so there is no such thing as a discreet conversation. DM is convinced we are all up to something and has taken to screaming and shouting whenever one of us tries to speak to him.