Hospital killing my Husband!

[Brucie]

Yes Bruce, we use role play as part of our dementia champions course,

Praise be!

Now we need to find a way to have it rolled out across England, Wales and Northern Ireland [and probably other parts of Scotland too].

Perhaps we can start a thread here on TP with is a "Charter for caring for someone who has dementia" and laying down what WE expect of services.

Forget how that caring is paid for - for the moment. Just what we want and expect for our loved ones.

I know we all think we know is needed therefore so should everybody else, but sometimes it is good to be prescriptive.

Mostly what people say is reactive - reacting to a situation experienced or read about. Perhaps a more proactive approach - such as Hazel has done in Scotland - would be better?

There is no better group of people to do it than those on TP.

Sorry - I'm not trying to hijack this thread, but sometimes the provenance of a suggestion is important to put ideas into context. Thus starting a new thread instead might tend to make it hang in isolation.

 

[TinaT]

Dear Tye,

I wanted to write to you last night but didn't think I could do justice to a reply. I was horrified to read your post. We had the same experiences with my dear dad ten years ago! The medical and nursing staff had to be pushed and pushed into giving him oxygen, tube feeding and drip fluids for dehydration. I visited every day and every day either his oxygen had run out, or his drip had run out, none of which the staff ever noticed!

Then one evening I arrived to visit and found that everything had been taken off him and I was told that he no longer needed them. He died that night! You can imagine how I felt and I still feel the raging anger even now 10 years later.

I did write a letter of complaint but as my mother is still alive the Hospital wrote back and said that they would only deal with a complaint from the nearest relative who was my mother. My mother God bless her is of the school of thought that whatever doctors and nurses tell her ashould never be questioned so I reluctantly had to let it drop. I also informed them that I had seen patients who were recovering from stokes who had been left food which they could not eat by themselves as they were paralysed. I saw the food taken away untouched by completely unconcerned staff.

I cannot bear the thought that this kind of thing is STILL happening! We must not tolerate this kind of neglect any longer. Because someone is old and infirm, their lives should not be just thrown away like some unwanted nuisance in society.

xxTinaT

 

[Winnie Kjaer]

I also informed them that I had seen patients who were recovering from stokes who had been left food which they coulde not eat as they were paralysed. I sawe the food taken awy untouched by comopletely unconcerned staff.

That has been the case each time my husband has been in hospital, hence the reason I always go from 8am to 11pm daily. Exhausting but necessary if I want food for him and have him refreshed regularly.
I agree it is totally unacceptable.

 

[maryw]

Praise be!

Now we need to find a way to have it rolled out across England, Wales and Northern Ireland [and probably other parts of Scotland too].

Perhaps we can start a thread here on TP with is a "Charter for caring for someone who has dementia" and laying down what WE expect of services.

Forget how that caring is paid for - for the moment. Just what we want and expect for our loved ones.

I know we all think we know is needed therefore so should everybody else, but sometimes it is good to be prescriptive.

Mostly what people say is reactive - reacting to a situation experienced or read about. Perhaps a more proactive approach - such as Hazel has done in Scotland - would be better?

There is no better group of people to do it than those on TP.

Sorry - I'm not trying to hijack this thread, but sometimes the provenance of a suggestion is important to put ideas into context. Thus starting a new thread instead might tend to make it hang in isolation.

This to me seems an excellent idea - power in numbers. And our ideas submitted to the matrons who supervise the wards for the senile elderly nationwide..

 

[danny]

Back to basics

I trained as a nurse 25yrs ago,we never went to college or university,all of our training was spent on hospital wards.We were constantly taught and continually monitored,as students,our main roles were,feeding patients,providing hydration,prevention of pressure sores,toileting,caring for relatives etc etc.Care plans were just coming in,hence the only paper work we had to fill in were turn charts and fluid balance charts.We had not heard of mrsa. So what has gone wrong then,nursing degrees were brought in and the wards lost an army of carers providing basic nursing care overnight.Student nurse were taken off the wards and put in classrooms,how can you learn empathy in a classroom,what you are all asking for are basic human rights for your loved ones,beleive me,it used to be there,you can not modernise basic nursing care.

 

[TinaT]

And so say all of us Danny!! The only time my father got a proper bed bath and pressure sore prevention was from a nurse who had been trained just at the time you describe. She really was the only one who gave proper nursing care. Unfortunately she was part time but I bless the care she gave my dad.

xxTinaT

 

[BeckyJan]

And our ideas submitted to the matrons who supervise the wards for the senile elderly

I personally think it is the Chief Executive of each Hospital Trust to whom we should be directing our complaints.

My husband was in hospital for over 8 weeks early in 2008. There was a bug and the ward was 'super cleaned'. I went to visit immediately following that process and sat on the bed (no chairs were ever available). The Matron who had never been present before, came and asked me not to sit on the bed for hygenic reasons!!! So she brought me a chair. Then I said 'if I bring towels in could I shower my husband tomorrow?' She looked hard and I had straight eye contact and said 'it is 6 weeks since he had one!!!!' She scuttled off and came back to say he will have a shower this afternoon. No apologies but I guess some horror.

I meant to complain to the Chief Executive but trials and tribulations took over.

Much needs to be changed in hospital procedures.

Jan

 

[CYN]

my husband was on an assessment ward in the local cottage hospital where all patients had dementia,within the first few days i found he was in pads, i told the nurse he did not need them she replied that he was urinating in inappropriate places...this was probably because he did not know where the toilet was.when i took him home he did not wear them and i just reminded him to go as you would a child .As Bruce has said it is to make it easy for the staff,and this was on a dementia ward.

 

[Brucie]

Perhaps it might make a really sensible banner for Alzheimer's Society to wield - "Alzheimer's Society's Dementia web forum members demand - professional standards in care - better care for loved ones who have dementia - caring nursing - appropriate training for carers - etc - etc -"

I'm sure the membership would give plenty of material of whatever kind might be required?

 

[larivy]

Tyjane sorry to hear how your husband is being treated i think there are to many chiefs and not enough indians. hope it all goes well on monday and you manage to get him home will be thinking of you love larivy

 

[Vonny]

Dear Jane,

I'm so sorry your husband isn't getting the care and attention he needs. I've no advice at all as our mum was well looked after in our hospital, mind you there were 3 of us there to chivvy them along and make sure things were done right. It's easy when you have a small army to help, I don't think I could have managed on my own.

Just wanted to send you best wishes for Monday and hope that your husband is allowed home and that you get a good care package to support you.

Take care

Vonny xx

 

[Skye]

Perhaps it might make a really sensible banner for Alzheimer's Society to wield - "Alzheimer's Society's Dementia web forum members demand - professional standards in care - better care for loved ones who have dementia - caring nursing - appropriate training for carers - etc - etc -"

I like that idea, Bruce. It would be good to channel our experiences, and have our voices heard.

 

[Brucie]

Thanks Hazel.

The thing will run or not according to whether there is someone at AS who can/will grab the idea and run with it.

I have no idea whether any person has that discretion, or the experience to do it.

I hope someone has the ability or will be given the discretion.

 

[KatherineW]

Dear Jane,

I’m very sorry to read of the distressing situation that you and your husband are in. I do hope that the meeting yesterday was helpful, and that you will be supported to bring your husband home soon.

Also, I’m sorry to muscle in on your thread, but I felt it was appropriate to respond to the point raised here by Bruce, around campaigning on this issue via TP.

I am always happy to alert our Campaigns team to relevant threads on TP, which may tie in or could assist them with their work.

However, it may also be helpful for TP members who feel strongly about particular issues, to join in with existing campaigning work that we are doing – such as our 'Putting care right' campaign:

http://alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200149&documentID=1107

Also, by signing up to our campaigners network, you could receive updates on all our campaigns, and become more involved in campaigning work around the issues that you feel passionately about.

An aspect of the 'Putting care right' campaign that may be of particular interest is our recent report, Counting the cost of dementia: caring for people with dementia on hospital wards. The report focused specifically on the huge variation in the quality of hospital care that people with dementia receive, and on the detrimental impact of this.

Lastly, our campaigns team put together some tips for nurses, informed by the areas of concern identified by the nurses and carers who participated in the research for our Hospital Report:

http://alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200306&documentID=1211

I hope that some of this is helpful.

Best wishes,

Katherine

 

[Lynne]

Katherine,you mentioned an AS Campaign 'Counting the Cost of Dementia: Caring for People with Dementia on Hospital Wards'

I admit this comment is a knee-jerk reaction to the actual words of that campaign title (not the campaign itself) but judging by many recent threads on TP the hospitals seem to be solving this problem by inappropriately discharging such patients regardless of whether they can truly take care of themselves!

 

[TyJane]

Equipment installed, at home, new Doctor on ward!!! 5 Doctors since being admitted.

I fear for my husband, he should be coming home tomorrow, but I still feel they are trying to hold on to him.

They are killing him!!!

I just hope, that his treatment has not been, compromised because I have complained.

Jane

 

[KatherineW]

Jane, I do hope that your husband came home today.

judging by many recent threads on TP the hospitals seem to be solving this problem by inappropriately discharging such patients regardless of whether they can truly take care of themselves!

Hi Lynne

I thought you might be interested to know that part of the Counting the Cost report, 'Problems with Discharge' (pages 38-9) focuses specifically on the range of common problems experienced during this stage of the process - including the one that you've highlighted above.

Best wishes,

Katherine

 

[KIMALISON]

My husband has been in name of hospital deleted by moderator Hospital, in Shorehan by Sea, for three weeks. He refuses to eat or drink.

They say they can not force him to eat, he has lost a terrific amount of weight. He is dissapearing before my eyes.

When he went into hospital he was not incontinent, but is now!

Do I have to watch him die?

Would appreciate anyone's views on this,

Jane

my Mum went into hospital and would not eat and was deterating fast i got her out as soon as poss and she picked up straight away . he will pick up once home. take care

 

[lin1]

Dear Jane,am so sorry bout the awful care of your husband in hospital. I hope u can get him home soon.

Im afraid 2 say that it's not only people with dementia that are treated with such inhumanity.

if an animal was treated thus their would be a huge outcry. our loved ones are not animals and deserve and should be treated with love and compassion.

perhaps when we have bit of time we could write 2 our mp's bout our concerns.

Katherine. trouble is(as you r prob well aware)when your a carer you often don't have the time or energy but I will certainly try!

 

[Amber 5]

Hi Jane,
So sorry to hear what has happened in the hospital. I hope that he is out by now. Thank goodness that I haven't had any experience with my mum staying in hospital - I dread the day.

What I can't understand is nurses taking away food that is uneaten from patients who clearly are not able to feed themselves. Goodness, nurses aren't stupid, they are human too and what if it was their own family member stuck in that position. Would they honestly treat them like that? Is it that they are too busy, or they think it's not their job? The same goes for the continence issues. Surely it is simpler in the long run and a lot more pleasant to keep patients clean (take to the toilet when needed) rather than having to clean up the mess and change bed sheets etc.

The only thing that is barely acceptable to me is if they are short staffed, then it should be possible and easy for relatives to help. Not made to feel that they shouldn't be interfering. I know it shouldn't be this way, but the least anyone should receive is most basic care of toileting and being fed/watered whilst ill in hospital.

It makes me very angry.

love Gill x