Read this.....and be warned.!!!!!!!

[milomia]

Sit comfortably and read this....it may help some of you in the future...but I warn you, I am sobbing, and an emotional wreck, and most of all ANGRY...and someones head is gonna roll.
Dad has Vascular Dementia...has had for 5 years, easy going, easy to manage and gentle, lives in his own home, his niece is his carer, lives across the road....we have NEVER asked for anything...no help , support, carers, health visitors...NOTHING.
Dad got bad constipation 3 weeks ago, we couldn't shift it and realised he was in alot of discomfort....so he is admitted to Hospital ( can't say which now as a legal battle is about to commence) First 2 days he was lively, singing, dancing and chatting to everyone...( he had 1 night on a assesment ward and then put on to a "elderly care ward"...we will touch on the misrepresentation of that title later.
On the 3rd day I rang on the morning to see how he was doing...a nurse came on the phone to ask why I hadn't warned them my Dad was violent.......deep intake of breath..."WHAT"...what do you mean..."he is kicking and punching the nurses, he is very violent"...oh my god, I am mortified...so sorry, but I am in shock.
I go down there to find my Dad sat on another patients bed in a very confused agitated state...the look on his face was awful, he looked like a demented animal...I asked what the hell had happened to him, they brushed it off as dementia, change of surroundings, constipation etc...and we were stupid enough to believe it....the following 2 weeks have been the worst of my and my siblings lives....complaining,past from Doctor to doctor, asking questions, finding our Dad covered in poo laying in bed, (the nurses wary of trying to clean him up, so waited for us to arrive)...he went downhill rapidly....couldn't wee, catheter put in....2 days later catheter pulled out...look back on my posts....I rang on the sunday to be told it had taken " 5 of them to hold him down to try to get the catheter back in" resulting in him puching a nurse, and he pulled the catheter back out.....IF he has the right to say no to meds, a wash, a shave, his dinner....then where the hell is it right for 5 people to pin an 89 year old man down and force a catheter up him??????????????????????????
We have asked all week where are the marks and bruises on his feet and ankles were coming from, somethings happened to him, could he have had a vascular break, or a stroke or something?? can someone from psych see him, why is the smell from his unrine so bad, what were the results of his urine test, why is the catheter in? Can you change his Meds for his prostate so we can put them in his food and drink ( told them he had refused to take his meds so can we have something that will still be effective in drink and food.) Result = and read this carefully......My beloved Dad has been let out of Hospital...covered in poo, about 8lb lighter, doubly incontinant, shuffling along, violent, aggressive, lost and looking like he should go into a victorian lunatic asylum.....our first night at home has resulted in him laying on his bedroom floor, covered in poo, half naked and rocking back and forwards then trying punch and kick my sister and I swearing at the top of his voice when we have tried to help him up.
He has been re admitted to the same hospital to a different ward...we are going to fight to find out what has happened to our Dad...we are strong people who will not stop until we get answers....he has a urine infection, but the Sister on the assesment ward barely recognised him from 2 weeks ago and was shocked at the way he had deteriorated...SOMETHING was wrong within a couple of days...NO ONE listened to us..he has had an episode or a mini stroke or something...but they have not chosen to check into it, get tests for it or even looked after his basic human rights.....We had faith in the NHS and the way they would deal and care for our Dad....we were blind,.. Because the bottom line is ....they don't have the time, the money, the knowledge or the qualifications to care for elderly and especially dementia sufferers...we have our local AS behind us, SS are panic sticken at the hospital, and they have put a "safeguard alert" on the ward where my Dad was.
We will get to the bottom of it....and now with the realisation dawning on us that we cannot take our Dad home and care for him as we wanted to....let me tell you...someone has done something, he has gone from us forever...and someone will answer to it.

 

[Josieb]

Oh my god I am so sorry for you. I was in a similar situation with my Dad but unfortunately he died, before that I had argued and fought the hospital all in vain. I won't go into detail. I found out after I could of insisted on staying with him 24hrs and believe you me I would of stood guard over him. Instead we lost him when there was no good reason. You have my deepest sympathy and my good wishes and thoughts will be with you every hour. Keep fighting they have no rights really they don't. You will win.

 

[Christin]

Hello, I am so sorry to read about your father. Just in case you haven't seen this site, I am popping the link in for you.

Pals - Patient Advice Liaison Services will be able to assist with complaints and advice.

Very best wishes to you all.

 

[sue38]

I'm so sorry - it sounds heartbreaking for you and your family.

I don't know what has caused the change in your dad (infection, stroke, disorientation) but I do know what it's like to experience poor care on a hospital ward; to be rung to be told my dad had attacked a nurse; and to realise that not one person involved in my dad's care had had any dementia training.

Do you have details of the medication your dad was given in hospital? My dad was given a sedative (without our knowledge) which had quite a devastating effect on him.

I hope you get some answers and your dad gets the treatment he deserves.

 

[lin1]

Oh Milomia
My heart was in my mouth as I Read what has happened with your poor dear Dad
I cannot begin to imagine how you are feeling
No one should suffer such in hospital

Get everyone involved you can think of to help you in your fight PALS, ss, age concern , mp, dads gp, and later on if necessary the national news papers

I would also try contacting Admiral nurses to see what they advise. i'l put a link here in a mo
http://www.dementiauk.org/what-we-do/admiral-nursing-direct/

you are going to need to be like a terrier

for your Dad to have been forcefully held down to have a catheter inserted and end up with bruises is so so wrong,
We used to call a gp in to sedate mum so the district nurse could catheterise mum

I do hope it is still the uti causing your dad to be so agitated, scared etc and dad improves when the infection has cleared

I remember how bad my mum could be when she had an infection

 

[eastiesgir]

what a heartbreaking series of events. I really do hope that you find out what happened to your dad and hopefully the hospital will ensure that such terrible things never happen again.

 

[Mun]

I was absolutely distraught to read about what happened(and continues to happen)with your dear dad. I've just recently retired as a nurse & I've witnessed at first hand some exceptional care,but equally some appalling care as well. You've hit the nail on the head when you say nursing & medical staff have little or no knowledge base to draw on when caring for elderly & dementia sufferers & it's scary to think how many millions will be at their ignorant mercy as the eldery population increases,if medical/nursing training does not take this more seriously.
My biggest fear is that my dad who's 89 with VD & still at home will become unwell & have to be admitted somewhere,it makes me panic to think about it. He has had two admissions over the last 2/3 years & in both cases became aggressive,confused & very frightened,upsetting me now to write this.
Keep strong,fight them all the way,they will try & wiggle out of taking any responsibility for your dad ending up like he is & seek legal advice ASAP. Keep notes of names,dates, things said to you by staff & you need to know the names of staff who were given the job of looking after your dad whilst he was in the hospital,they should have a work book with patients names in & who was assigned to "care" for them.
Val xx

 

[milomia]

Thankyou

All of you, thankyou...really...it is good to know that we are all in this together.....with or without dementia...we are hopefully all going to get old...and it beggers belief there are some people out there that don't quite grasp that.
Thankyou Val for your kind words and advice...we are keeping a record of dads carers..( some good some not so good )...on tuesday my sister asked to speak to one of the 2 that were on his notice board over his bed....to be told they were both off together for lunch...where is the logic in that...I may just put myslef forward in government to sort this bloody awful mess out....I could do a better job with my eyes closed....bring back the Ward Sisters....white gloves to check for cleanliness, and less bloody paperwork, more listening and hands on caring...I got sick of looking at the top of Doctors heads sat at computors and not even looking up to say so much as a friendly hello...what on earth has happened to our society?? My poor poor Dad was (and still is) the most wonderful well travelled caring and intelligent Man that had a heart as big as a lion, would always give anyone the time of day, was funny, daft in fact...and was a fab Dad to 5 of us, with 10 grandchildren, and now 5 great grandchildren.....we must never lose sight of the fact....how we treat our elderly is a huge reflection on the future of our society.

 

[thatwoman]

Hi,

I'm so sorry to read what has happened to your Dad. When my Dad was in hospital just over 2 years ago, he walked in and was continent. He left 3 months later, unable to even stand, 5 stone lighter and doubly incontinent. And I recognise the description of him looking as though he should be in an asylum: that was exactly what we saw when we visited Dad every day.

However, there was good news too. We couldn't care for him in the state that he was in, but we found him a nursing home where he has lived for over 2 years now. He has gained weight and is happy. After 3 months in the home he started to walk again, although that was short-lived. He had another stroke, which stopped him, although he can now stand to be helped in and out of bed.

I know that you are angry and upset, and you have every right to be, but I just wanted you to know that things can improve. We have had quite a few close calls in the last year, when Dad has had seizures and been in a coma for hours (or most recently days), but I refuse to have him admitted to hospital again. The staff in the nursing home understand why I have done that, and they all care about him. When he has been at death's door, all the staff have looked after him with great care, some even coming in on their days off to see how he is. I know we're in the right place now, and that is all I can do for him now. I visit daily (sometimes twice a day), and sit talking to him, or helping with his food. I know that if there is a change in him, the staff will see it right away and let me know. The day before his most recent seizure, the nurse on duty rang me to say he didn't seem quite right. I went to the home, and I knew what she meant: he was just not himself, but there was nothing you could put your finger on. It gives me comfort to know that he is cared for by people who know him well enough to see the subtle changes. In hospital they didn't even notice when he had fallen out of bed
I hope your Dad is in a calmer place soon.
Love and hugs,
Sue

 

[Mun]

Milomia,

If I can help in any way just PM me. I think you should stand for a seat in Parliament,it's people like you that the elderly,vulnerable people need in our society to stand up for them. Go girl go !!!!
I'm saddened to say that despite being a nurse for 35 years it's horrific incidents like your dad's that make me ashamed to admit that I am a nurse. I've even had to "let slip"that I'm an ex-nurse manager if I'm unhappy at something that's said or done at one of my mum's numerous OPD appointments,boy they sit up then, but I hate doing it & shouldn't have to resort to that. Every person has the absolute right to be treated with dignity,compassion & understanding.... if a doctor or nurse can't or can't be bothered to at least attempt that,then my advice is GET OUT OF THE BLOODY JOB !!!! Sorry everyone for rant.

Val xx

 

[Clementine]

This is just too hearbreaking Milomia. Hospitals are just the worst for dementia sufferers. If Mum would not have had to go to hospital after a fall, she would not be as bad as she is now or would not have deteriorated so quickly. It was absolutely the worst time for her and the hospital staff were not very caring (but perhaps I am unfair here, she was in that difficult stage, agressive, restless, still mobile but very difficult to handle)
On hindsight we should have organised a CH for her earlier or put a "round the clock" care team in place so she would never have gone "walkabout" and would not have had the fall.
It's such a good feeling, the home she is in now will never send her to hospital ever again, they will cope with everything there.

 

[SWMBO1950]

Your post makes for distressing reading. I have fought for years to keep my mother out of the local hospital but on one occasion last year I was not able to do so

My 97 year old mother fared very badly in the local hospital on this occasion (I have written about it before). Like your father she was on an elderly ward - for over 75's - but I was told they are not about people with dementia - doh Many people over this age bracket have dementia of some discription so why segregate them and then not have the expertise to look after them properly???????

Fortunately when I got my mum home after 2 weeks I was able to turn things around. She was in a poor state when I got her home and then 4 days after she got back it was as if a light switch had been turned on and she was back!

I am really sorry I hope thing improve for you and your dad. xx

 

[outofmydepth]

I wouldn't let my mother be put in the hospital I actually work in,that's what I think of nhs hospital care of people with dementia

sadly she had to go in one (also can't name for legal reasons )and they hadn't a clue,lost her often and left her in toilets on her own even though she was 'seeing' things ,not feeing her (they didn't realise she had dementia they said )......the list goes on and on and on

 

[SWMBO1950]

Yep that sounds about right (I am an NHS pensioner) and I feel the same as you but sometimes the circumstances take over - usually to the detriment of you elderly relative

I wouldn't let my mother be put in the hospital I actually work in,that's what I think of nhs hospital care of people with dementia

sadly she had to go in one (also can't name for legal reasons )and they hadn't a clue,lost her often and left her in toilets on her own even though she was 'seeing' things ,not feeing her (they didn't realise she had dementia they said )......the list goes on and on and on

 

[Redwitch]

Milomia

This must be so distressing for you, it is hard enough to deal with the normal rate of progression of this illness. To witness this huge deterioration in such a short period time must be devastating.

Two weeks ago my Mother was sectioned and taken to the nearest available bed, a 2-hour round trip... but guess what, she is happy, the staff are lovely and she appears less anxious, her language will never improve, her repatition will probably get worse and she probably won't come home again. All I want is for the right thing for everyone.

I wish you all the strength and tenacity with your battle, let us know how you are getting on

Jan

 

[okthought]

Sympathy

An ordinary hospital ward is not an appropriate place for a person with significant dementia. My mother become deranged and paranoid (though the psychiatrist wouldn't agree) on each of two occasions she was admitted to hospital. I'm not sure what hospitals are doing that is so wrong, but I suspect that staff have neither the training nor sufficient time to deal with patients with dementia, especially when accompanied by blindness, as in my mother's case.

 

[mrs pepperpot]

Oh my God im crying at your pain,,,,im so very very sorry at what has happened to your lovely Dad....This is so painfull for you all , i cant help in any way but i just wanted to say im thinking about you and your family.xxx. Your story has reinforced completely for myself the reason why me and 2 of my brothers are so protective of our lovely gentle mother, we have her living in her cabin on her own land in between my brothers homes, we didnt have time for planning permission for the cabin but we dont care, for our mum theres no other way, we also ask for nothing from anyone, we keep her as far away from the system as is possible for i know that once they get their hands on her theres no hope left, pessimistic perhaps but your dads story is the true story of whats happening to our elderly citizens, wheres the care ???? she has 24 hours care between myself and 2 of my brothers, shes never alone....i hope something good happens for you soon.xxx

 

[handyjack]

Very few (if any ) NHS hospitals are actually set up to deal with dementia. They tend to put elderly people (whatever they are suffering from) onto the geriatric wards, where nursing staff just don't know the first thing about the special needs of dementia sufferers. Our local "super hospital", has only just set up a special dementia ward (for sufferers who need operations , or hospitalisation for a short time) and the hospital has been open now for 3 or 4 years (such is the speed of progress within the NHS) They should have had a specialised dementia ward when it was built. They are now training nurses in dementia care. (probably more how to fill in the forms correctly though, rather than actual care).
Your post is a real eye opener to the basic lack of care in the NHS for dementia sufferers everywhere.

 

[Mun]

handy jack,
My sentiments exactly And I've been in the mire of the NHS for 35 years !!

Val x

 

[flowerpot]

My heart goes out to you and yours. It's appalling how our elderly relatives are treated in hospital. With hindsight I can see all the mistakes that were made with my Dad. They forced a feeding tube down his throat five times there are plenty of us in the family and we worked a rota system so that he was never alone apart from overnight and even then I sometimes sat in the chair watching over him all night. It was appalling to see how many never got anything to eat or drink for hours especially the ones that didn't get many visitors.

We had open visiting which a lot of the nurses didn't like and made life hell for us. They had Dad in a room of his own but every now and then they would move him on to the main ward which totally confused him and they tried to stop us being there all the time but that didn't work as we just ignored them and got on looking after Dad. Which in itself is appalling we shouldn't have had to spend all that time looking after him when there was people getting paid to do so.........

Sorry for the rant but you've just brought it all back to me and it makes me so angry that nearly two years on nothing has changed in any of our hospitals........I think I'll join you in Parliament and maybe together we can get this bloody mess sorted out. After all it's not rocket science millions of us every day look after our elderly relatives without any harm coming to them.

This is why our GP and nurses know that we don't want MiL to go into hospital under any circumstances.....

Take care and I'm thinking of you xxxx