Cockroach Cafe - newly refurbished for the summer

tonton welcome. Lots of support here.
country I’m so sorry about your df. Great info from minty

TonTon welcome to the cafe. Mum was happy to co-operate with the doctor and the memory clinic, immediately forgot about the brain scan and never grasped the dementia diagnosis. "I really must talk to the doctor about my memory" popped up at least weekly. MIL agreed to the doctor phoning her but had forgotten about it by the time he called and refused to take any memory tests. Mum's diagnosis came with the paperwork for attendance allowance and a prescription for medication that can slow the decline. MIL got nothing.

The never ending phone calls from mum brought me to my knees, I took my mobile number off speed dial because she was calling that then the landline and there was no break from it. The only reason mum phoned and MIL didn't was that one acknowledged that she couldn't tell the phone handset from the tv remote and she went back to a phone with a curly wire. MIL steadfastly clung to the cordless phone, she didn't hang up leaving the line open for twenty hours at a time and attempted to dial on the Sky remote.

Countrygirl I am so sorry that you can't get in to see him. The restrictions on visiting make a difficult situation even worse.

@MintyCedric dad isn't considered end of life yet but he admitted with delirium 2 weeks ago and he hasn't improved although the uti he had has cleared up. He has heart failure and kidney disease. He had pneumonia at the beginning of July and has not been right since. It's only a few weeks ago I was telling him off for trying to clear out the pond and move paving slabs he has always been so bloody independent despite being partially sighted and decidly wobbly on his pins. Now he is convinced "they" are trying to force him to move from the home he left 35 years ago and just rambles incoherently.

She is very paranoid and blames when things go wrong because she is forgetting how to do things, but we are also the only people on hand to help so we receive multiple pleading calls a day.

Welcome! My mum is starting to get a bit like this. My only hope is if she's going to go down that slippery slope it happens quickly.

@countrygirl99

I'm so sorry you're going through this. Sorry to ask as haven't caught up yet, but have you been told specifically that your dad is now considered at 'end of life'?

If so the hospital should relax visiting rules particularly if you get 'the call'. You may have to go in separately but an exception should be made.

This is the care home advice we referred to when Dad was int he home and they were insisting we could only visit twice a week max:

www.gov.uk/government/publications/visiting-care-homes-during-coronavirus/update-on-policies-for-visiting-arrangements-in-care-homes

Your local NHS Trust should have hospital/area specific advice as well and definitely don't hesitate to contact PALS if you feel you're being fobbed off.

It was quite clear in our case that as Dad had hung on as long as he had already the home manager was a bit sceptical about him being end of life, even though his fees were being paid on that basis.

She eventually capitulated on the Thursday and dad passed in the early hours of Sunday morning. I wish we'd made a fuss sooner.

Hello All! I've come to say hello.

We are dealing with MIl and are at the stage when she has been referred to our local Complex Care and Dementia team by our GP, but she is refusing to see them or to acknowledge that there is anything wrong with her.

She is very paranoid and blames when things go wrong because she is forgetting how to do things, but we are also the only people on hand to help so we receive multiple pleading calls a day.

DH is bearing the brunt, as he is both saviour and also the evil originator of all her problems. He and I are conspiring to make her commit suicide, apparently. Fortunately she is determined not to do this.

We are the start of a long journey, I will be back!

Dad is still in hospital and still very confused. If he does ever come out it's going to be to a care home. Mum doesn't accept that she had dementia so clearly can't accept that she can't cope with a severely frail and confused old man. There is still no visiting at all so m is really struggling. I don't know if I'm ever going to see him again - end of life visits are limited to 2 and DB is the one who can get mum to the hospital quickly.

...it was absolutely terrifying watching FIL blackout but when he came round he wasn't aware that anything had happened.

Very similar with mum...she could really recall if she'd lost consciousness or not.

That's interesting Dint, about making boundaries easier. It's the reason my husband used to phone his mum from the car on his way to work and on his way home, the end of the journey meant the end of the call. I knew why he did it but I couldn't put it into the right words.

Look at that Minty, I said I'd been in A&E and you asked how mum was (she's ok I guess although her speech has gone out of the window this week). My SIL didn't manage that much concern, she waited for me to finish speaking and then switched right back to her tale of how hard her life is. It's only in this last few months that I've seen just how much like her mother she is.

If your mum hadn't have been seated that would have been an unexplained fall. Syncope - it was absolutely terrifying watching FIL blackout but when he came round he wasn't aware that anything had happened.

@Knotaknitter oh no! How's she doing now?

I had the opposite, it was weirdly quiet for a Saturday night.

Mum was on the phone to me about 5pm yesterday (for the 4th time) when she cried out and the phone went dead. Shot round there and found her slumped in her desk chair apparently unconscious.

She came to quickly with a bit of prodding and shouting, but was pretty vague.

In a nutshell shed spent the whole day overdoing it and getting stressed out, culminating in crawling about on the floor looking for DVD of dad's funeral that she thought she'd mislaid. She had an attack of leg cramp and the ensuing struggle to get to her feet and over to the phone caused a combined atrial flutter/BP spike/pulse drop that made her back out briefly.

No further discussion of the issues around it all - her stubborn refusal to accept help unless it's from me or a small number of chosen friends; not looking after herself properly especially re meds and eating/drinking; the confusion with everyday tasks, forgetting where she's put things etc.

I guess I will have to try to get a GO appt to discuss it but I'm back at work in 10 days. Have no idea how I'm going to cope with her, a full time job and my own health issues but perhaps it will be easier with the boundaries enforced by routine.

I'm sorry to hear that Minty. She might take some action now that someone other than you has said something, now that it's official.

I had three hours at AnE last Sunday morning with mum who had a TIA during the night. When the carers went in to wake her up her speech was slurred and her face had drooped, by the time the ambulance had arrived she had recovered. I thought it would be quiet on Sunday morning but it was mad busy.

Hi Minty
I hope everything is ok for you. Give an update here when you get a chance.

Let us know how you get on Minty.

They said a few hours at least when we got here at 7.45pm.

Oh minty hope you get seen and sorted soon.

Hi all.

For some reason this thread dropped off my active ones so I thought everyone was enjoying the summer free of drama!

Will catch up properly later. For now I'm sat in A & E with mum who had a 'funny turn' earlier. Told the paramedics about the various issues over the last few months and combined with her BP, pulse etc they decided she needed to come in and they've flagged up that we should both speak to the doctor to try and get some better support in place.

Ha bloody ha!

I also saw that on Gardeners' World, Sandwich. it looked great.

I understand what you are saying Knot about normalising things. It's like the old saying about boiling a frog - we are the frogs and we do realise we've been on the boil for some time now because we haven't noticed the heat being turned up.

knot I can completely understand that. I always tense with a private number.
marmite that sounds great. There was a fantastic piece on Gardeners’ world yesterday about edinburgh garden and it’s community activities.

I've been out for a walk this morning. It's taken me this long (nearly four months) to not feel rising anxiety as I put my key in the door and look for the winking red light on the answering machine. I don't miss coming in to 16 messages, her getting increasingly distressed because I'm not answering, having to listen to all of them in case one wasn't mum, not reaching the end of them before she called again. Now my life has returned to normal I can't believe what I used to deal with and think was normal.

That sounds interesting Marmite. I have a garden which I enjoy, but I sometimes go a bit mad with the secateurs when in need of imposing order in my life!

I've been accepted for a place on a therapeutic gardening scheme, I'm looking forward to it. Think that will be good for my mental health.

I went to the gym this evening, and had a swim. It so helps my mental health.