• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Don't think I can do it again.

notsogooddtr

Registered User
Jul 2, 2011
922
Then problem is that if that patient stays another day another patient might well have their procedure postponed such is the pressure on beds.I hope everything goes well for your mum for as long as possible and that you can manage to keep juggling all the plates you have in the air!
 

haribocrazy

Registered User
Jan 8, 2016
38
notsogooddtr--yes, I know why its a bad thing. Its just that in a ward where most of the patients cannot remember why they are there it seems to be unsafe practice to leave food and drinks where they are easily reached by people who should not be eating and drinking.

My mum had a drink on a day when she was nil by mouth because her water was left in front of her and she was thirsty. If I had not told the staff that she had had a drink she would have still had the echo-cardiogram, with all the dangers that would have presented.

The lady in the bed next to mum had told mum she was thirsty. I asked mum why she gave her sweets and she said that she tried to give her a drink but because she was lying down she spilt the water. So she gave her sweets instead! It made me laugh because it was just like her to try and help. It was a bit of normal in an very abnormal (for me) situation.

I think people like my mum must be difficult to manage. She is physically quite fit--before she collapsed she walked miles each day--much fitter than me--and so where a lot of the other patients stay where they are put mum is off exploring and "helping"!

And plate juggling is a very good description of what we are all trying to do. thanks again.xx
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
You are really very welcome. Speaking for myself, I've received so much help, in various ways, from TP that if I can give even a little bit back, I'm happy to do so.

All I can do is roll my eyes at your description of the hospital staff. You do wonder if they get any training at all, sometimes. Unfortunately, there is no class for common sense.

Given your description of your mum and her pre-hospital activity levels, I'd say you should definitely go for day care/the day centre/lunch club/singing for the brain/anything you can find. A day program will not only keep her occupied and socializing, but also might be able to provide her with "jobs" that allow her to feel useful and helpful. I know, I know, something else for your to-do list.

It sounds like you're doing an amazing job and we certainly wish you all the best.
 

notsogooddtr

Registered User
Jul 2, 2011
922
notsogooddtr--yes, I know why its a bad thing. Its just that in a ward where most of the patients cannot remember why they are there it seems to be unsafe practice to leave food and drinks where they are easily reached by people who should not be eating and drinking.

My mum had a drink on a day when she was nil by mouth because her water was left in front of her and she was thirsty. If I had not told the staff that she had had a drink she would have still had the echo-cardiogram, with all the dangers that would have presented.

The lady in the bed next to mum had told mum she was thirsty. I asked mum why she gave her sweets and she said that she tried to give her a drink but because she was lying down she spilt the water. So she gave her sweets instead! It made me laugh because it was just like her to try and help. It was a bit of normal in an very abnormal (for me) situation.

I think people like my mum must be difficult to manage. She is physically quite fit--before she collapsed she walked miles each day--much fitter than me--and so where a lot of the other patients stay where they are put mum is off exploring and "helping"!

And plate juggling is a very good description of what we are all trying to do. thanks again.xx
It must be a nightmare to manage the needs of so many people,I try to believe everyone(almost)does their best(usually)It's too scary and depressing to think otherwise.That doesn't mean I'm a soft touch BTW.I can understand you finding a bit of relief in a comedy moment,I wasn't criticising you or you Mum,just pointing a point about the precarious state of the NHS.With all it's failings it's very precious.
 

fizzie

Registered User
Jul 20, 2011
2,730
Then problem is that if that patient stays another day another patient might well have their procedure postponed such is the pressure on beds.I hope everything goes well for your mum for as long as possible and that you can manage to keep juggling all the plates you have in the air!
Then the hospital needs to improve care because this time it was someone feeding pastilles next time it could be someone inadvertently doing something fatal!!!!
 

Caseys

Registered User
Dec 10, 2015
37
Hello all. New here--looking for advice please!
My mum collapsed at home just before christmas. She has had many tests etc and all have come back fine and the doctors can find no reason for her fall, why she was unable to stand and spent the night on the floor. She was very confused, hallucinating and "difficult" but seemed physically fine.
She has been diagnosed with depression in the past and I have been to the memory clinic with her about 2 years ago, where we were told that she did not have dementia but depression. Since then her depression has got very bad and her short term memory has almost gone. Since being in hospital I have asked them to test her mental capacity and I have now been told that she is early stage alzheimers. She is no longer hallucinating but her memory is much worse than before she collapsed and she just seems differnt, but its difficult to describe.
As a family we are new to alzheimers but we are not new to adult social care.

A few years ago I took on the care of a cousin with a learning disability after his mum died. It was ok at first but after about a year I was finding it harder to cope. I live about 40 miles from my cousin and found I was going in the middle of the night to sort something out, driving for nearly 2 hours there and back and getting up to go to work. And spending nearly all weekend there. I asked ss for help--they did an assessment and said that as a family we were coping fine and he was safe. He was fine--it was me that was going mad. He died 2 years ago and all I could feel was relief. I loved him and came to hate seeing him.

And now I find myself in exactly the same position. The hospital have assumed that my brother and I will care for mum. They assume that we will visit, do her shopping, sort out her house (its not safe for her) and be at appointments etc when they say. I get phone calls each day asking if I have sorted the house and when I will pick her up.
I have told them that I will not be her carer. I have explained to each of the 4 wards she has been on and to each of the 3 discharge planners that I will not care for her but for some reason they do not seem to think I mean it.
I love my mum but I just cannot do it all over again.

What should I do? I am feeling guilty because I do not want to look after her and the hospital keep saying "when you get mum home" and "when will you be taking her" and "she does not need to be here". I keep saying that if they think she is safe in her house and they feel she can take care of herself then they should just send her home. But then, on the day they say that I should pick her up because she is safe--and I say go ahead but i will not be there---they do not send her because they need to do another assessment.

I feel that the hospital just want her out and are not listening to anything we say. Her first ward , when we told them she was confused said "no she's not". And now the discharge team are not making any sense and different people are telling us different things.

Is this normal? Should I take over the care of my mum?
If you have got to the bottom of this essay then many thanks--just needed to get it off my chest to people that have been there.
You have to fight for yourself. You can't be her daughter if you can't cope. Try and get your gp's support. Good luck xx
 

theunknown

Registered User
Apr 17, 2015
420
Just wanted to add my voice to those saying you should keep refusing to take over the full-time care of your mum when you know it would affect your life in a way that surely your mum wouldn't want. It's human nature to feel guilt (even if guilt doesn't help us to achieve anything), and there'll always be people willing to play on that and demand things from you because it makes their life easier. I've read the whole thread and obviously you have stuck to your guns. Good for you. You'll be able to offer your mum affection and care without being dragged into the abyss by it. It's not as if you didn't already know how this can feel.

My mum wasn't allowed to return to her home from hospital, so I haven't had to go through your situation. The trouble is when the ongoing problems for the patient are about social care, rather then medical health issues, the NHS will want to pass on the patient to family and/or social services to free up a bed for somebody who needs medical treatment. The 2012 Health and Social Care Act has massively contributed to this separation of health and social care; even 'though these issues impact on each other and (in my opinion) should not be seen as separate things. It's obvious you've had a very trying time of it. It's so frustrating when you don't have a real point of communication with a person/people, and are having to constantly having to explain and repeat yourself over and over again. I don't blame the staff on the wards for this - it's the fault of the organisational and managerial set-ups that run the NHS. It's become a profitable business (for some) and it's the people at the sharp end that suffer.

It became obvious, once my mum was discharged to the care home I found in my area, that I would never have been able to look after her adequately in my own home. She's not been diagnosed with dementia, but seemed to be suffering from mental health problems and was sectioned at the beginning of this year. There's no way in a million years that you'd be benefitting your mum by making yourself ill by taking on her full-time care. I feel terrible guilt that my mum's in a home, but I know there was no other option to keep her as safe as she can be.
 

fizzie

Registered User
Jul 20, 2011
2,730
Then the hospital needs to improve care because this time it was someone feeding pastilles next time it could be someone inadvertently doing something fatal!!!![/QUOTE
Have you any ideas as to how this could be achieved?
Lots notsogooddtr - but the NHS staff should be responsible for making sure that this kind of thing doesn't happen, not the general public who leave their loved ones in the 'care' of the so called 'professionals' - and am currently in discussions with my local hospital about exactly that :)
One of them is to bring back Matrons and discipline to the wards - they are chaotic but that is just one. My grandmother nursed at Barts in London for many years and her toes would curl at the wards these days
 
Last edited:

notsogooddtr

Registered User
Jul 2, 2011
922
Lots notsogooddtr - but the NHS staff should be responsible for making sure that this kind of thing doesn't happen, not the general public who leave their loved ones in the 'care' of the so called 'professionals' - and am currently in discussions with my local hospital about exactly that :)
One of them is to bring back Matrons and discipline to the wards - they are chaotic but that is just one. My grandmother nursed at Barts in London for many years and her toes would curl at the wards these days
Re the example given,a lady with dementia giving another patient sweets,how could this be prevented?Ensure nobody on the ward has sweets maybe?But then patients who are not nil by mouth could be upset.Isolate the lady with dementia?24 hour surveillance?Things were very different in your grandmother's day,my MIL was also a nurse for many years and says the same thing.I think the old fashioned big wards must have been a lot easier to manage,everyone in view.But patients prefer small bays so that's what we now have.The new hospital being built in my city will have only individual rooms,god only knows how that will work
 

fizzie

Registered User
Jul 20, 2011
2,730
Some hospitals have one to one care support for those that need it and it works very well indeed. Not nurses, care support staff, not people who have not necessarily been to university (in fact who have probably not) but proper old fashioned care staff - the sort that save people's lives and make them feel better and make them feel like human beings that someone cares about and not just number 3 in bay 8 and improve their quality of life and try to make sure that if something is bad for them or is going to kill them that they don't have it. Costs less and works well for patients too - I know because I've seen it in action.
 

notsogooddtr

Registered User
Jul 2, 2011
922
Some hospitals have one to one care support for those that need it and it works very well indeed. Not nurses, care support staff, not people who have not necessarily been to university (in fact who have probably not) but proper old fashioned care staff - the sort that save people's lives and make them feel better and make them feel like human beings that someone cares about and not just number 3 in bay 8 and improve their quality of life and try to make sure that if something is bad for them or is going to kill them that they don't have it. Costs less and works well for patients too - I know because I've seen it in action.
Do care staff replace nurses or work alongside them?I think all hospitals have health care assistants but I don't know how easy it is to get one to one care,yet again a matter of resources.I think 'John's campaign'was started as a response to.this issue