Had enough today.

[Marnie63]

Thank you Sam.

OK so I'll trump everyone with my darkest book secret. I have two copies of all my favourites (three if you include my kindle copy). I have one copy in the bookcase for tidy reading and a best copy stored away unread, just because.... I don't think I've told a soul that one so you'll all have to keep my secret. xxx

That is indeed a very dark secret Lavender! Are you going to share some of these very precious favourites with us?!

I have decided that for the remaining time mum is in hospital (she's due to be brought home by ambulance next Monday morning - but first the hospital has to do a risk assessment because we have a step up into the house - honest, I didn't make that up!), I need to spend less time on the ward or just look away. In my view the care is just not good. Last night mum said she was desperate for the loo, but because they had just brought the food round, they weren't allowed to toilet anyone in the bay, so mum had to suffer until everyone finished eating, then was allowed on the commode. And yet today, when they put mum's lunch in front of her and I attempted to start helping her to eat it, we had to endure the cleaning lady (nice as she is) banging and crashing right next to us, removing normal and 'nasty' waste, spraying chemicals, and waving her mop around. None of it seems to make any sense to me. Poor mum is unable to communicate to the staff that she needs the toilet, so she sits in soiled pads until either I spot them or the staff do a round of checks which, yes you've guessed it, isn't very often. Once today I found mum in a wet pad, well actually the whole bed was wet, and later she needed a no 2, but by the time they responded .... And from what I saw, they are not cleaning her up that well afterwards. For the next three days our usual carer will be spending a few hours with mum at the hospital so I'm going to get her to help me check mum over to make sure she's clean with no sore bits. I'll also see if we can get her onto a chair and into the shower room for a good wash and shampoo.

I feel so sorry for those people who cannot speak up for themselves and have no one to do so for them. I'm really sorry if it seems like I'm moaning about the NHS. It's a fabulous thing, to get all this medical care 'free', but when the care isn't up to scratch, it's very, very worrying.

I will meet our live in carer on Sunday, the day before mum arrives home. Oh, and I've also been told family are not allowed to travel in the ambulance from the hospital back to home. Is it me?!

 

[Harrys daughter]

That is indeed a very dark secret Lavender! Are you going to share some of these very precious favourites with us?!

I have decided that for the remaining time mum is in hospital (she's due to be brought home by ambulance next Monday morning - but first the hospital has to do a risk assessment because we have a step up into the house - honest, I didn't make that up!), I need to spend less time on the ward or just look away. In my view the care is just not good. Last night mum said she was desperate for the loo, but because they had just brought the food round, they weren't allowed to toilet anyone in the bay, so mum had to suffer until everyone finished eating, then was allowed on the commode. And yet today, when they put mum's lunch in front of her and I attempted to start helping her to eat it, we had to endure the cleaning lady (nice as she is) banging and crashing right next to us, removing normal and 'nasty' waste, spraying chemicals, and waving her mop around. None of it seems to make any sense to me. Poor mum is unable to communicate to the staff that she needs the toilet, so she sits in soiled pads until either I spot them or the staff do a round of checks which, yes you've guessed it, isn't very often. Once today I found mum in a wet pad, well actually the whole bed was wet, and later she needed a no 2, but by the time they responded .... And from what I saw, they are not cleaning her up that well afterwards. For the next three days our usual carer will be spending a few hours with mum at the hospital so I'm going to get her to help me check mum over to make sure she's clean with no sore bits. I'll also see if we can get her onto a chair and into the shower room for a good wash and shampoo.

I feel so sorry for those people who cannot speak up for themselves and have no one to do so for them. I'm really sorry if it seems like I'm moaning about the NHS. It's a fabulous thing, to get all this medical care 'free', but when the care isn't up to scratch, it's very, very worrying.

I will meet our live in carer on Sunday, the day before mum arrives home. Oh, and I've also been told family are not allowed to travel in the ambulance from the hospital back to home. Is it me?!

Marnie this just upsets me basic care isn't asking to much

Regarding all the good news celebration time hooraaa
Isn't it good to here good news
It's very wet and windy tonight and I love it
Regarding books I'm sorry folks I'm a disappointment to you all I hate hard backs andpaperback I spill drinks on them I fall asleep in the bath with them I bend them flat sometimes to the point of the pages coming loose maybe I treat them so bad as I had nearly all my childhood of the things round my neck like chains let me explain........ I am dyslexic and didn't learn to read till I was 16 my family were shocked when I revealed this at the age of 50 but I managed to be a success at whatever I put my hand to

 

[Lavender45]

I think I've given away enough secrets for now Marnie. I'll save my toothbrush obsession for another time.

I'd never dispute that the NHS is a wonderful thing, but it is worrying when the care you see falls short of even a reasonable basic standard. I know wards are short staffed, but like you I've seen time wasting chats between staff about holidays etc whilst patients need attention. That's wrong.

I know this isn't going to help, but when mum was first sectioned and moved from our local general hospital to her first secure unit they all but pushed me into the ambulance with mum for the journey in case she "kicked off" en route. Maybe it's a local policy, but it seems unfair when your mum would obviously feel better travelling with you at her side. X

 

[Lavender45]

Marnie this just upsets me basic care isn't asking to much

Regarding all the good news celebration time hooraaa
Isn't it good to here good news
It's very wet and windy tonight and I love it
Regarding books I'm sorry folks I'm a disappointment to you all I hate hard backs andpaperback I spill drinks on them I fall asleep in the bath with them I bend them flat sometimes to the point of the pages coming loose maybe I treat them so bad as I had nearly all my childhood of the things round my neck like chains let me explain........ I am dyslexic and didn't learn to read till I was 16 my family were shocked when I revealed this at the age of 50 but I managed to be a success at whatever I put my hand to

It shows how tough resilient and clever you are not only succeeding at whatever you turned your hand to, but leaving your family with no clue until you told them.

Now for the books. I understand your relationship with books is different to mine, but it's plain naughty to spill and bend and sink them in the bath! Actually it's probably much healthier than my obsessive need to keep them just so. x

 

[Harrys daughter]

It shows how tough resilient and clever you are not only succeeding at whatever you turned your hand to, but leaving your family with no clue until you told them.

Now for the books. I understand your relationship with books is different to mine, but it's plain naughty to spill and bend and sink them in the bath! Actually it's probably much healthier than my obsessive need to keep them just so. x

I find books helpful when I struggle to reach things lol
My weekness is wood metal and fabric I carnt drive past a skip without nearly crashing the car if there is a bit of timber sticking out

 

[Pollytickle]

Has anyone used Crossroads; I think they are like a carers agency, but supposedly a charity...They've been recommended but I really don't know what I'm supposed to be looking for, or if their costs could be deemed 'reasonable' ( Mum would be self-funding for a while ) For all I know £45 an hour could be a good price for sitting during the weekend while £78 a day is excessive - I just don't know! Those prices are completely fictitious but I bet not that far from reality....oh lordy...what a nightmare

 

[Marnie63]

A friend of mine (in a different county) used Crossroads when caring for her sister. I think they provided a few free hours of sitting service a week. For me I lost on the postcode lottery with Crossroads. There is one near us, but into the next county, but we don't qualify as we don't pay our C.Tax to them. In our part of our county, there isn't one. End of.

I hope you have more luck - it's definitely worth looking into. The thing with dementia is to find and take as much help as you can, if you don't need something, then you can 'shed' it later on. Never turn anything down!

I'm just about to leave for the hospital. At least we're on count down now, and at least I have the carer there for a few hours today to Friday for some moral and practical support. I wonder how long mum has sat in her soiled pad today? Maybe I'm being too harsh on the staff and maybe it was just in between checks, but any length of time sitting in a soiled pad can't be good, can it? Oh please, just let me get her home so that we can keep her clean and well looked after, for however long she has left with this utterly, desperately dreadful illness.

 

[jorgieporgie]

Good Morning Ladies,
Hope you all survived the winds last night, I thought hurricane Urma had reached our road it was that bad.
Marnie glad you have everything in place for your Mum coming home and I think having someone living with you will give you peace of mind until you get used to it all.
It's such a shame that basic cleanliness is not done to a high standard in hospitals, I know they have limited time but this is a necessary for hygiene and preventing UTI's and then costing the health service having to use anti-biotics, leaving people in soiled pads is not acceptable.
Lavender what's this abut the 'toothbrush' you are funny I am not a big reader but do have a book on the go at the moment and like you have to have the book neat and not creased. What are you reading at the moment anything good?
Hope you all have a decent day, I am decorating and hoping to get it finished before my 'HOLS'
Hugs to you all xxx

 

[Lavender45]

Afternoon everyone. I need you all to cross your fingers yet again. Mum's placement in PC is looking ever so slightly dodgy. I've discovered this afternoon thar the paperwork isn't complete and so funding approval isn't in place, this is information from mum's ward and PC. The ward have asked for our social workers manager to call them. I have called the social worker and she is out on a visit and may not be back today. I have asked to speak to her manager. It's been almost an hour and no call back yet. PC have given a deadline of Friday. I know I'm paranoid, but this isn't looking great.

 

[Lavender45]

On a lighter note my toothbrush obsession.

We'll here's a confession for you, I cannot resist toothbrushes, it's a mistake to let me near the toothbrush aisle in Boots, Superdrug or anywhere else. They are irresistible, all colourful and shiny and claiming to keep your teeth and gums in perfect condition. How do you resist, then there are offers and 3 for 2 deals, well how can you not, you just have to have them.

You know you're meant to change your toothbrush every few months, with me it's weeks, sometimes days. They are my secret fix. Some like fancy jewellery, others expensive wine, for me it's toothbrushes. Each to their own I say, but keep it quiet, I'm coming across as more than a little eccentric here. x

 

[Izzy]

I'm coming across as more than a little eccentric here.

Never!!!

 

[Lavender45]

Just the tiniest bit Izzy. x

 

[Marnie63]

Mum managed, by some miracle, to cling onto the rotunda today and was put into a wheelchair, so when lunch arrived, myself and the carer wheeled her round to a 'day room' area so that she could eat her lunch at a proper table. During her lunch, she said and did a few things which reminded me of the mum of old, pre the dementia. It was quite weird and wonderful! She was tapping the carer on the knee and joking with her, whereas at home she had been cross with her and waving her stick around. I still have no idea if she will walk again, but as it's only been three weeks since the stroke, I have to remind myself that she has actually done quite well really. I know she won't give up if she has some strength and understanding left. The pad situation seems a bit better today but I think they are overdoing the diuretics as mum is peeing excessively but not really drinking that much. I think they've gone too far the other way with the meds. Am waiting for a doc to appear to discuss this. Don't want her dehydrated. Four more days of this and then no doubt more dramas on Monday to get her home. Wish I could just wheel her out, and into the car, but with her current state of mobility, that's just not possible.

 

[Marnie63]

Afternoon everyone. I need you all to cross your fingers yet again. Mum's placement in PC is looking ever so slightly dodgy. I've discovered this afternoon thar the paperwork isn't complete and so funding approval isn't in place, this is information from mum's ward and PC. The ward have asked for our social workers manager to call them. I have called the social worker and she is out on a visit and may not be back today. I have asked to speak to her manager. It's been almost an hour and no call back yet. PC have given a deadline of Friday. I know I'm paranoid, but this isn't looking great.

Hoping it works out Lavender. If 'paperwork' needs to be done, is it really that hard to just get on and do it? What's wrong with people?!

 

[Lavender45]

It's me again!

Marnie I really admire your mum, she's such a trouper!

Right the social worker has called back, she says all paperwork is complete, but that funding approval isn't in place and could take up to a week to get it in place. We don't have a week, PC have given a little ground we now have up until Monday/Tuesday next week. The reason approval will take time is that the cost is over £2,000.00 a week That sort of cost is South East costs isn't it, I don't think PC has noticed we are in the North West, for up here that is a huge weekly amount though I should admit that does include one to one day time support, still it's a scary figure. X

 

[Harrys daughter]

It's me again!

Marnie I really admire your mum, she's such a trouper!

Right the social worker has called back, she says all paperwork is complete, but that funding approval isn't in place and could take up to a week to get it in place. We don't have a week, PC have given a little ground we now have up until Monday/Tuesday next week. The reason approval will take time is that the cost is over £2,000.00 a week That sort of cost is South East costs isn't it, I don't think PC has noticed we are in the North West, for up here that is a huge weekly amount though I should admit that does include one to one day time support, still it's a scary figure. X

Doesn't this meen your mum's best staying put till funding is arranged .... I know nothing though

 

[Lavender45]

Yes HD it hopefully means she stays in the secure unit until funding is resolved and she moves to PC or worse case we lose the bed in PC and she has to remain on the ward a while longer.

The next up and coming hurdle is mum's section 3 tribunal on Friday. Essentially it's to review whether she should remain sectioned. A solicitor has been appointed to act in her best interests using the least restrictive option. In my opinion a secure hospital is where mum belongs just now until she can move to an equally secure nursing home, but things have a habit of going pear shaped so I'd be lying if I told you I wasn't a bit worried.

I asked the Alzheimers Society for advice and if mum came off section there would have to be a discharge meeting so it's not like mum would be on my doorstep immediately after the tribunal, but as a joint owner it could be decided that she could return home with a care package as she has a right to be here. It all seems very stacked in favour of giving mum what she wants. We'll see. X

 

[LadyA]

If they dare, Lavender, you just make sure that they understand that YOU are not part of any "Care Package"!

 

[rosy18]

Got to echo LadyA Lavender and Surley your safety must be an issue.
Think we better hold off the party for a day or two.
Why oh why is nothing straight forward

Marnie words fail me.....not able to travel with your Mum in the ambulance......what idiot has made up that rule

Jorgie are you on countdown to your hols not long now

Hope you are all having a good evening and oh yes a result on Tuesday we made it to the singing at the fire station xx

 

[Lavender45]

Evening everyone

Good news! The funding had been approved for 2 weeks and mum moves to PC on Monday. Her care will be reviewed after 2 weeks as they are hoping to take away the one to one support. It's a huge relief.

The shame is the tribunal goes ahead tomorrow. It seems utterly pointless to me, but in my eyes it hardly matters, mum moves on Monday and that's really all I care about. X