hospitals are really not equipped for people with dementia!

[Suzanna]

Hi all - this will be a rant, you have been warned !!

On sat night mum fell- cut head, trip to a&e, found UTI, sent home with anti-biotics. Monday, new carer turns up -new as in her first week ever as a carer, not just new to us- (old one on hols), dad stays home from work for a few days til she gets used to mum and vice versa, wednesday, dad goes to work, carer struggles to get mum to eat, feels she has a temperature (she didn't, just she sweats a lot, sometimes), panicks, rings agency, agency say call GP to cover her back, GP says, send her back to hospital 'just in case'. Mum admitted, why? not sure... think nurse felt dad wasn't coping at home with her. Stayed at hospital all night so as to let dad get a break, no sleep (though mum slept well!) next day, sent to different ward, get to ward, bed not ready, stuck in corridor, asked which bed it was we were waiting for, it wasn't electric, explained mum is immobile, worried about pressure sores, no worries, we'll put an air matress on it, air matress put on, over hung bed, sides wouldn't go up, mum at risk of falling out, moved to bed anyway as that was all on offer, mattress didn't work properly, mum slumped in it like a bean bag, me at breaking point, cried lots, electric bed found (the effectiveness of tears?!) i asked if a DR would see her.... there wasn't one available. Saturday came, can we see a DR? - not on the weekend unless emergency, this of course, being bank hol weekend means no DR til Tuesday. Mum is fine, no temp, eating well, drinking well, can't go home though as there is no discharge coordinator til Tues. AAAAAAAAAAAAAAAAAAAGHHHHHHHHH!
sorry this was a massive rant, just very frustrated.

Makes me think, NHS hospitals are just no place for someone with dementia (unless specialised i suppose), nurses do best but too underesourced. our ward, 6 nurses for 31 beds by day and 3 for 31 by night. lady in bed next to mum also has dementia, but no family to visit, her food is put infront of her and then taken away when she doesn't eat it, she was left without pad change so long today the urine made it to the floor, it is a wonder she has urine, noone ever gives her a drink, the jug remains by bed untouched. between my dad and i we have been by mums bed making sure she is cared for properlly from 7-am til 11pm, otherwise she will be left just like the poor lady in the bed next door. that lady is someones mum, sister, friend or neighbour and it breaks my heart.

also - when mum said she needed the toilet, they shoved a bed pan under her (she yelped). i tried to explain, she won't used that as it is unfamiliar, nurse "she'll have to use it" me, well she won't because she's not used to it, nurse "tell her not to be so silly" IT'S NOT A CASE OF BEING SILLY - she doesn't have the language comprehension for me to explain how to use it!!!

last thing (for those of you i didn't lose already!) - mum was coughing on normal fluids, as a new SLT i asked for thickner for drinks, i was given them, went home at 11pm, arrived back at 7am, glass of unthickened water by mums bed, despite the tin of thickned clearly being right next to the cup.... if she gets Pneumonia i will NOT be happy!!!!!!

thinking of you all,

Suzanna xxx

PS: stupid nurse kept asking me today how long it had been since mum's CVA .... SHE HASN'T HAD A STROKE SHE HAS AD!!!!

 

[Grannie G]

I understand fully Suzanna. I had a similar experience with my mother eight years ago.

I did write a formal letter of complaint and the next time she was admitted things were a bit better, but not much.

I have no complaints about any of my husband`s hospital treatment but he has only been seen as an outpatient and I`ve been there to speak for him.

It is very frustrating.

 

[JPG1]

Dear Suzanna

We have had similar experience, and we don’t think you should wait for a “formal letter of complaint” to be written, sent, received, dealt with. You need to act now. As you are doing already.

One thing we found worked was to ask for a pen and paper (even though we may have had them in our pocket) and then to write list of questions/problems/requirements, making sure we noted our name, address and telephone number. Then stated quite clearly and calmly to whoever was in charge of the Ward on the day: “We are not leaving until such time as our questions have been answered”. We too had enormous sympathy with those under-resourced ward staff, and they were quite grateful that we made the effort, because ultimately it assisted them too. Doctor was summoned … and answered our questions.

But we did not meet the kind of rudeness that seems to have been handed out to your Mum. If we had, we may not have needed the pen and paper!

One of the examples of abuse we saw was when we were sitting patiently to one side, while our relative was “behind the curtain” receiving intimate treatment. Man in bed was calling out for a bedpan; a male nurse came and shouted at him “I’m not deaf. Keep quiet”! Man in bed said “I’m desperate; I have to go”. Male nurse: “hard luck”. Male nurse went away and acquired bedpan, then returned. Patient said: “I am so sorry for causing trouble”. Male nurse: “so you should be”. Patient was aged about 75; nurse was aged about 25. Patient had all sorts of tubes connected; nurse was fully mobile. Patient was in hospital and requiring care; nurse was paid to provide that care. Says it all really.

You are right, NHS hospital is no place for someone with dementia.

Just wanted to say that we think you should act now, not wait for a formal letter of complaint to be “filed”. The world of an inpatient with dementia is far removed from the world of an outpatient, with or without dementia. Just thinking of what happens between the hours of 11pm and 7 am, when you are not present, is more than enough to think about.

Wishing you all the strength you can muster!!! We’ll send some of our virtual strength to you.

 

[suzanne]

empathy

I totally empathise with you, had awful time with my mother in hospital,I complained bitterly and often. Complain as loud as you can to everyone you can find, it won't help with what has happened but should stop it happening again.[I would also complain in public as embarressment is a wonderful leveller.]

 

[ROSEANN]

Dear Suzanna
I know how you feel( see my thread 21 hours in A&E).
I have wrote a letter of complaint about my husbands care but I have not heard anything.

We came home without me ever seeing a Doctor even though I asked time and time again.

He came home two and half weeks ago and we only got his dischage letter on friday and this had no mention of what medication he has to take or if they want to see him again.

I know nurses are busy people but at the end of the day AZ sufferers are patients as well and as such are still entitled to the same care as others.

Thats my rant over.
All the best
Roseann

 

[Susi T]

Hi Suzanna,

I can sympathise with your comments, Dad has been to hospital three times within the last 2 weeks, he has urine infection, faulty "balloon" and today to top it all the catheter came out!

This time last year he was admitted to hospital with seizure/altered state of consciousness, he went down so quickly after and spent 2 weeks in hospital, after which time I had to admit that I couldn't cope with him at home. Between him trying to follow me out of the ward and following vistors out it was a nightmare!

Hope your Mum isn't in too long.

All the very best

Susi XX

 

[Tender Face]

Suzanna, don't really know what to say other than I hope it has helped to have a rant ... and I really do sympathise and understand.

Goodness knows my mum's recent treatment in hospital was an eye-opener ... as for the business of bed-pans and commodes... when mum was hooked up to tubes (and not always realising she was 'plugged in') I was screaming about the indignity it caused her not being able to shuffle to the bathroom or to even understand that she couldn't .... "She only needs to press the orange button to call a nurse" was one response ..... "Do you think she is capable of knowing /remembering what the orange button is, what it is for and where she has last hidden it?' was mine ......

Without the help of fellow non-dementia patients helping mum throughout the night by hitting their 'orange buttons' and summoning nurses to help mum I really don't know how she survived her stay as well as she did .... Goodness knows how that aided their convalescence!?

The ignorance of medical staff on a geriatric ward (who surely must see their fair share of dementia) was absolutely frightening.

Love, Karen, x

 

[jenniferpa]

I echo what everyone else has said - hospitals are awful if you have dementia. The one thing I would say is, though, why can't you just remove your mother if nothing is happening and she's well (as can be expected)? True you'll probably be considered to be discharging against medical advice but if the only thing that is holding them up is the lack of a discharge coordinator I would be inclined to just do it.

 

[Suzanna]

update

cheers for everyone responses,

i had a strong feeling that i wouldn't be the only one to have had such an experience!!

As for Mum, i have had to leave the hospital bedisde vigil team, in order to return to my home (an hour away) to prepare for work next week.... as a new to the job person i can't just rock up tomorrow, i need to plan what to do with various patients - eek!HOWEVER, Mum is not alone, my Dad was there first thing and now our regular carer who has known mum for a good 3 years is up there looking after her. She has offered to do this voluntarily -god bless her- as we doubt SS will pay for her to look after mum when she is technically being 'looked after' by the hospital!. Dad reports she is perkier today (great for us, not so for the nurses she may yell at!)

We have considered discharging her 'against advice' etc as we do have POA, however, we are slightly concerned that if she wasn't to get over the UTI we might get slapped with some form of negligance legal case!!?

option two, is to transfer mum to a private hospital, don't get me wrong, we can't afford this really, but are of the opinion that 'you can't take it with you' therefore, sod it!

We are giving the hospital til tomorrow to get there act together, we want doctor and physio review and a 'fast track' continuing care reassessment all to happen ON TUESDAY so that a care package can be arranged asap. What do people think my chances are!!?

its so difficult having to go to work, if i was there on Tuesday myself, i think that we would stand a much better chance, but i just can't. I only started job 2 weeks ago and took last friday off to go up to the hospital, ditching a nurse training day i wasn meant to be delivering - ironically, in the process!

I am going to write a list of everything/one my dad needs to hassle and will make sure i get a lunch break to ring and find out what progress (if any) is being made.... other than that - is there anything else i can do?

Its all so tricky, just feel like quitting work so i can make sure Mum is OK, not feeling like i can cope with the both!!

hope everyone is well,

Suzanna xxx

 

[jenniferpa]

I'll tell you what always seemed to manage to get my mother out of hospital - calling and asking for an appointment with the consultant. From "oh well, we have to do this, and do that" it was "she's being discharged this afternoon". Never failed (and I never did get to speak to the consultant).

 

[sue38]

Hi Suzanna,

Another one here who has got the t-shirt.

My Dad was admitted with a suspected UTI the Thursday before the May Bank holiday weekend. Why do these things always happen on a Bank Holiday when there are no doctors around?

By the Sunday his temperature was back to normal, but we still hadn't had the results of the urine test taken on the Thursday. Physically he was fine, but mentally he was deteriorating, becoming incontinent, and we just wanted him home.

Like you we were reluctant to discharge him without the hospital's agreement. In the end we wrote (typed) a strongly worded letter addressed to 'the consultant in charge' listing our concerns and asking for specific answers to the questions we had. I faxed a copy to the Patient Liaison Services (or PALS) and a copy to the GP (making it clear on the letter that we had copied them in) I also made it clear when I expected a reply (i.e. wihtin 24 hours). I handed the letter to the ward sister as we left evening visiting.

We were called to a meeting the following lunchtime with the doctor and ward sister and my Dad was discharged 10 minutes later.

This worked for us, I hope you get your mum home soon.

 

[Suzanna]

thanks for the tips!

thanks for the tips guys,

i'm going to have a letter on standby to hand over tomorrow if things don't get sorted. BRING IT ON!!!

Suzanna xxx

 

[jc141265]

My experiences in the hospital with Dad:
* You should see the staff struggle to explain to a man with no words that he has to sit still in that loud clunking machine whilst they scan his brain!
* You should see the staff tut tut us for putting the only thing handy a wooden 'ahh' stick that doctors use, in Dad's mouth so he would stop grinding his teeth and then see the look of shock and surprise when the other patients vocally supported our move and shut the staff up. (His grinding used to be an unbearable endless sound)
* You should see the looks of bewilderment when we would take Dad to the toilets and I would carry his bed sheets with me so I could cover the mirrors in there because he used to go quite nuts to see his reflection!
* You should have seen the doctors face when he saw Dad's brain scan not knowing that Dad suffered from dementia (only saw his age, which was 60 at the time and had had a seizure).

Best trick I found to get Dad discharged was when I said to the staff, okay you want to keep Dad in, but he's fully mobile, I can't stay with him all night, have you got the staff available to make sure he doesn't wander about and break one of these very very expensive machines?? Whaddya know he was suddenly given the all clear.
If it wasn't utterly infuriating that they don't have any facilities to deal with dementia sufferers it would be funny. I have to admit I did enjoy Dad stressing them all out.

Then there's the other side, when Dad was really really ill last year, the hospital initially refused to take him as he was terminal??? Thank god we were able to get them to change their minds. My mum was threatening to go to the minister or even chain herself to the doors if need be!!

Then there was when they put nil by mouth over his bed as he was aspirating his food and the staff on the day told us the best thing for him was to just let him starve to death, it would only take a few days if we were lucky Fortunately a sane doctor came on shift the next day!

So to sum up, all I can say is that I feel for you Suzanna and good on you for doing the best you can in a difficult situation.

Note: I live in Australia, so my experiences with hospitals may be different to what people in the UK suffer.

 

[Dave W]

Reading this out of interest, as my Mum had a nightmare week in the local hospital just before Christmas.

Apart from asking for an appointment with the consultant, there is another way of getting most hospitals' attention. Start asking very firmly about their official complaints procedure and how to get hold of a copy. Works a treat, and you don't even have to follow through with the complaint.

In the meantime, how do we campaign to get more training in dealing with dementia for ordinary nurses? My Mum was in an ordinary ward, not a geriatric one. As with others here, other patients were as much help to her as the staff, who were sweet but over-run and had no idea how to cope/deal with her. A little more understanding would have helped both the staff and my Mum so much ... and the same training would go on to help countless others. Surely that counts as an investment?

 

[JPG1]

Agreed, Dave W,

Training is not just for the benefit of today’s patients, but tomorrow’s also … and the year after that. If those trained staff are still there at the end of the year and that seems to be the thinking going on: why bother to educate and train staff if s/he (and they) is/are gone by the end of the year to a more lucrative position elsewhere. (Can’t blame them in many instances.)

We’re becoming very cautious about any “formal complaints procedure”, because it is always offered whenever a serious problem emerges to which the staff can see no solution, because they have not been trained and/or allowed to deal with the problem. Which is not to say that particular staff should be charged with finding a solution always. But the ‘formal complaints procedure’ is becoming the “shield behind which we have been told to hide”, the ‘we’ being any staff involved, and that goes right up to Managers.

Also, the staff have almost “breathed a sigh of relief” if ever we have asked how to move our concerns upwards? We have chosen never to use the word complaint – we use the word “concern”. Seems to change the thinking …almost as if they suddenly realise that there is something that they too should be “concerned about”, rather than complaining about.

How do we campaign to get more training in dealing with dementia for ordinary nurses? Well, we are currently engaged in ‘correspondence’ with PCT, with local authority, and with Care Home providers of nursing care, and with local government councillors.

Perhaps we should write one “overall-encompassing letter” - if that is possible – and send it/email it to as many “authorities” as we can think of. All suggestions gratefully received. But please supply email address of your own local responsible authority (rather than snail mail address) and we will do the necessary.

Perhaps the Alzheimer's Society could help us out with this one. By devising a means of receiving from us all and then despatching FROM all of us to ALL OF THEM OUT THERE, via easily accessible email addresses, sending then all of our demands for "Immediate Dementia Training" across the board, from GP to each and every one of those "authorities" we are then passed on to, be it from GP to social worker, and then on to the mental health care teams, to day centres, care homes, hospitals .... well, you name it, each and every 'care service' that we come to meet.

Hoping that your Mum’s nightmare week in the local hospital has left no lingering after-effects, in either your Mum or yourself. (Apologies if we have not kept up-to-date with your Mum, so if we are speaking ‘out of turn’ then … sorry!)

 

[connie]

Not sure I understand.

Perhaps we should write one “overall-encompassing letter” - if that is possible – and send it/email it to as many “authorities” as we can think of. All suggestions gratefully received. But please supply email address of your own local responsible authority (rather than snail mail address) and we will do the necessary.

Who are the 'we';

and we will do the necessary.

 

[JPG1]

The "we" was intended to refer to each and every one of us, posting here, all trying to connect with the authorities charged with caring.

 

[jenniferpa]

I know people have differing views on this, but it has been my experience that communicating via email unless you are talking to a specific person about a specific issue is about as effective as writing your hopes on a piece of paper and burning it. There is too much in the way of spam and fluff floating around out there - the people who are the decisions makers are very unlikely to take notice of yet another piece of electronic mail. It's way too easy for people to to send email, way too easy for people to be effectively anonymous, and way to easy for people to ignore.

 

[JPG1]

The "specific" recipients would all be defined by their email addresses.

If members of TP can make the effort to define those email addresses.

It's fairly easy to work out the email address for the Responsible Person, be it the Chief Executive or Deputy Chief, or ... or ... or even .... the Complaints Manager. Very easy.

We are all emailing day by day by day, and also when posting on TP, in a way, and sending to TP via a "defined email/recipient address", but nevertheless, the means of communication is the same.

And if that "email" is "signed" by massive numbers of dementia-connected-persons, then that "email" would become as valid as any placard held above the shoulders on any demo outside 10 Downing Street, especially if the existence of that email is made known to 10 Downing Street in advance. Well in advance of its arrival. And any email can be printed out and posted to those dinosaurs who might need a paper hard-copy. Easy.

It is not impossible. Nothing is impossible.

Where there is a will - there is a way.

 

[jenniferpa]

Did I say it was impossible? No I didn't. Did I say I thought it was pointless? Yes I did. By all means knock yourself out - I just don't think it will get anyone anywhere, but I'd be delighted to be proved wrong.