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Visit to A&E

hodge

Registered User
Feb 26, 2013
22
walsall
My husband has Alzheimers and last Saturday he was suddenly gripped with severe stomach pains I dialled 111 to describe his symptoms and the decision was made to send an ambulance crew. They arrived promptly and having checked him over decided to take him to A&E. This was approx 9pm, we finally left the hospital at 4.30 am. The whole experience would have been distressing for anyone in elderly years (he is 74, I am 63) but for someone with dementia who was so obviously disorientated, the experience was beyond belief. It is worrying that there is no specialist provision for someone with dementia. Dont get me wrong, I know anyone who is in A&E is there for good reason and probably in as much distress, but the lack of provision and understanding left me worrying that this illness is still not catered for by the medical profession.
 
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Kjn

Registered User
Jul 27, 2013
5,835
I know my dad was admitted on a Monday morning 8.30 and didn't move from a tiny cubicle until 4pm , he was distressed, upset, not a single member of staffed asked if they had eaten ..obviously mum couldn't leave him, a dr finally asked her and brought a couple of sandwiches apologising , dads diabetic as it is. Mum even had to ask a nurse to be with him while she used the toilet. No thought re dementia, he is still in hospital and the wards have also been clueless re dementia with posters saying they work with dementia:eek:
 

irismary

Registered User
Feb 7, 2015
499
West Midlands
Hi Hodge. It is so frustrating. When my husband was in hospital following a stroke they had his bed marked with the butterfly symbol but many staff either did not look or did not know what it meant. They got me to fill in the "this is me" sheets the day before he came home. I couldn't get him home quick enough. Medically they were superb, care sadly just not appropriate for PWD.
 

Kjn

Registered User
Jul 27, 2013
5,835
A butterfly irismary, nine of them here. I've noticed a this is me sheet in folder on dementia ward, nobody has asked us to fill it in..*sigh*
It's worrying our healthcare can't even consider our pwd.
 

Aisling

Registered User
Dec 5, 2015
1,806
Ireland
My husband has Alzheimers and last Saturday he was suddenly gripped with severe stomach pains I dialled 111 to describe his symptoms and the decision was made to send an ambulance crew. They arrived promptly and having checked him over decided to take him to A&E Wolverhampton. This was approx 9pm, we finally left the hospital at 4.30 am. The whole experience would have been distressing for anyone in elderly years (he is 74, I am 63) but for someone with dementia who was so obviously disorientated, the experience was beyond belief. It is worrying that there is no specialist provision for someone with dementia. Dont get me wrong, I know anyone who is in A&E is there for good reason and probably in as much distress, but the lack of provision and understanding left me worrying that this illness is still not catered for by the medical profession.
Am so sorry hodge. Same situation here. I had experiences like you. I get so mad at the lack of knowledge of dementia in hospitals.

Aisling ( Ireland)
 

Ann Mac

Registered User
Oct 17, 2013
3,693
My husband has Alzheimers and last Saturday he was suddenly gripped with severe stomach pains I dialled 111 to describe his symptoms and the decision was made to send an ambulance crew. They arrived promptly and having checked him over decided to take him to A&E Wolverhampton. This was approx 9pm, we finally left the hospital at 4.30 am. The whole experience would have been distressing for anyone in elderly years (he is 74, I am 63) but for someone with dementia who was so obviously disorientated, the experience was beyond belief. It is worrying that there is no specialist provision for someone with dementia. Dont get me wrong, I know anyone who is in A&E is there for good reason and probably in as much distress, but the lack of provision and understanding left me worrying that this illness is still not catered for by the medical profession.
My Mil somehow managed to badly cut her leg, on her way up to bed one evening - OH took her to A&E, and was there for around 8 hours overnight, before they finally saw a Doctor. During that 8 hours, Mil's thought she was on a ship, thought she needed to escape, called out abusive comments to nurses, demanded to leave and basically got as upset and agitated as you would expect of a then 74 year old with dementia. The only concession made was that she and OH were moved to a side room - and OH felt that was more about giving the staff some peace, rather than for Mil's benefit. Within 10 minutes of leaving the hospital, Mil couldn't remember having been there - but the impact on her emotions, and therefore the upset and agitation, lasted for several days afterwards.

Outside of the dementia specialism, its been my experience that few medical staff have even the smallest clue about dementia, sadly - after that experience, I had to take Mil to see the district nurse at our GP's surgery to have her dressings changed. The appointments were 3 - 4 days apart. I explained that Mil had dementia, that she couldn't remember not to leave the dressings alone and would remove them in between visits, and I asked for spare dressings to take home - I was told that they were ' very expensive' and advised to 'keep an eye' on Mil and stop her - I explained that I'd have to sleep at some point, and couldn't watch her 24/7. So the DN's solution was to then lean close to Mil, and speaking very loudly, slowly and clearly, she told Mil that she must leave the dressing alone, she mustn't remove it and when Mil promised that she wouldn't touch it, the DN gave me a satisfied nod as if to say 'There you go - problem solved' :rolleyes:

Dealing with medical issues, especially emergency situations, is stressful for both our loved ones and us - a little more awareness from the medical staff we encounter would go an awful long way to easing some of that stress for us all!
 

Witzend

Registered User
Aug 29, 2007
4,291
SW London
Outside of the dementia specialism, its been my experience that few medical staff have even the smallest clue about dementia, sadly - after that experience, I had to take Mil to see the district nurse at our GP's surgery to have her dressings changed. The appointments were 3 - 4 days apart. I explained that Mil had dementia, that she couldn't remember not to leave the dressings alone and would remove them in between visits, and I asked for spare dressings to take home - I was told that they were ' very expensive' and advised to 'keep an eye' on Mil and stop her - I explained that I'd have to sleep at some point, and couldn't watch her 24/7. So the DN's solution was to then lean close to Mil, and speaking very loudly, slowly and clearly, she told Mil that she must leave the dressing alone, she mustn't remove it and when Mil promised that she wouldn't touch it, the DN gave me a satisfied nod as if to say 'There you go - problem solved' :rolleyes:
Oh, dear, Ann Mac - that did give me a (very hollow) laugh! Reminded me of the time my mother was at A and E for a cut hand - staff had absolutely no clue, and I couldn't make her sit down for them to look at it, let alone keep still. A dressing had to be put on while she was pacing up and down on my arm, and she had ripped it off 5 mins after arriving back at the CH - ditto every other the staff put on.

Yet on a previous visit to A and E at the same hospital, staff were brilliant - but the nurse told me her mother had dementia, so she understood.

You do wonder what training - if any - staff ever receive. How long would it take just to impress on them that people with dementia - at least beyond a certain stage - CANNOT remember instructions? Half an hour? Why is it so difficult for supposedly reasonably intelligent people to understand this?
 

Ann Mac

Registered User
Oct 17, 2013
3,693
You do wonder what training - if any - staff ever receive. How long would it take just to impress on them that people with dementia - at least beyond a certain stage - CANNOT remember instructions? Half an hour? Why is it so difficult for supposedly reasonably intelligent people to understand this?
The other frustrating - and sadly regular - occurance was that before Mil moved in with us, she would frequently forget a lot of very important hospital appointments, for issues such as her COPD, diabetes and angina. A few times she received letters telling her that she was being removed from this or that consultants list because of failure to attend and if (and it was a big IF) she thought to tell us about these letters, or if we found them (usually 'filed' in the cutlery drawer or some other strange place) I would phone and try to explain. The ignorance I was met with was astounding - I'd be advised to 'get her' to tell us about the appointments so that we could make sure she attended in future. I'd explain that she has dementia and would probably forget that she had had a letter, let alone be able to remember to tell us about it. It was suggested that I get her a calandar and get her to write down appointments - I'd explain that she would forget that she had a calandar, or forget that she had to write it down. Then I'd get a lecture about how much missed appointments cost the health service. I'd agree it was dreadful and suggest it would be cheaper if they took our address and sent a duplicate letter to us - no, they couldn't do that - patient confidentiality (Mil at the time was in complete denial and totally refused POA). So it was a stalemate. So frustrating for us, so worrying that Mil was probably missing some really vital appointments at times, an expensive waste of time for the hospital - but absolutely no understanding or common sense on their part to help us get round the problem :(

Things like this must be so common - distress at being kept waiting hours in A&E, the inability to remember specific instructions about medical care, the missing appointments - and yet there is such a lack of awareness, let alone any attempt to help PWD's or their carers cope with these issues :(
 

Witzend

Registered User
Aug 29, 2007
4,291
SW London
Yes, it's astounding how many people just don't 'get' the realities. 'Why not write it down for her? Surely if you ring her to remind her to take her medication...?' Etc.

I can't be the only one who's wanted to scream, 'For God's sake, if it were that simple, don't you think I'd have thought of that?'

Absolutely no understanding that almost as soon as she'd put the phone down, or looked at whatever it was, my mother would have forgotten whatever we or it had said.

So frustrating when the govt. bangs on about improving diagnosis rates, or whatever, but apparently never does much if anything about ramming awareness into the heads of NHS staff or others who are supposed to be helping, but too often just add to carers' frustrations.
 

Plymum

Registered User
Jan 9, 2014
135
I've just filled in a Friends and Family Test at the hospital my Mum is in.
Despite posters everywhere telling me "This Is A Dementia Friendly Hospital" why are the staff on the ward surprised she cannot retain in her mind a) the exercises the physiotherapists give her b)that she is in hospital c) that she cannot walk d) that she needs to drink . My stress is exacerbated by being told every time I enter the ward. "She's not drinking" I could scream!!!!!
 

Kjn

Registered User
Jul 27, 2013
5,835
It is ridiculous isn't it, I see posters saying that shops and banks are trying to be more dementia aware....how about starting with our nhs !!!!!:mad:
 

irismary

Registered User
Feb 7, 2015
499
West Midlands
Young but lovely GP had to conduct an examination on my husband to check for enlarged prostrate - it took some time to get him in position shall we say and she commented after that she had never been in that situation before. She was kind and patient and did her best. She even seemed to appreciate the experience - she got some small insight from it. I don't suppose its covered in training other perhaps than in theory.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,587
Bristol
Continence service gave OH some pelvic exercises to do in the toilet, how she was going to do that with Dementia never occurred to them even when I pointed in out. Private osteopath was lovely, kind and understanding. So, a little common sense and patience does exist out there.

Those 'this is me' leaflets are only for show. We got one on the final day before discharge last time.

Sorry Hodge, hope you and your husband are recovering from your ordeal.
 

Pear trees

Registered User
Jan 25, 2015
441
When my mum was in A&E last month we told everyone we saw she had dementia straight away, but the doctors kept on directing questions at her that she simply could not answer and got even more distressed and confused, then asked us the same questions!
On the ward there was no sign saying she had dementia. We were told every visit that she was not eating or drinking unless prompted and helped, and constantly getting out of bed and rifling through patients' things, especially after visiting hours. One nurse was clearly getting impatient with her one evening, and another asked if we could visit more to help keep an eye on her and make sure she drank! We all work so very difficult.
 
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Bunpoots

Volunteer Host
Apr 1, 2016
4,111
Nottinghamshire
I dread my dad having to go into hospital. One time he was there he managed to escape. I got a phone call from the hospital asking me if I knew where he was cos he hadn't eaten his tea?!!

He was at my house eating fish and chips because he said the hospital had forgotten to feed him before he was discharged . There'd been a shift change and the new staff hadn't been informed that he had dementia and was inclined to get lost.

Dad was very convincing (this was early days when we didn't realise that if he couldn't remember he'd just make something up). When I asked him if he had any meds or a discharge letter he said they didn't give him meds and the letter was being sent to his GP. I imagine it's very difficult for hospital staff especially when some PWD come across as normal non-confused people.

They need a better, more secure system. Very difficult ☹

And, yes, I had to go back to the hospital to fetch the stuff he should have brought home...
 

LynneMcV

Volunteer Moderator
May 9, 2012
3,879
south-east London
Much needs to be done around the whole A&E experience for dementia patients.

When my husband turned violent earlier in the year we ended up in A&E by ambulance for my husband to get medical intervention.

My husband had already attacked our son because he believed he and I were plotting to kill him. Regardless of this, and my husband's growing anxiety at having me around, we had to sit for nearly two hours in the crowded waiting room while I tried my best to keep things calm.

In the end I had enough and went and knocked loudly on a staff door. When it was opened I told the nurse exactly what the situation was, adding that we would not be accountable if my husband became so stressed that he started to hit out in the waiting room.

We were moved to a more appropriate area within a few minutes, and although it was still many more hours before things were in place for my husband to be admitted to a secure unit at the hospital, at least we were not on public show in the general waiting area.

As for the 'this is me' booklet, like someone has already said, it is just a paper exercise. The OT put together a lovely care plan based on all the info provided but in reality the staff did not have any idea about the care plan or what was in the 'this is me' booklet. Extremely poor communication.
 

hodge

Registered User
Feb 26, 2013
22
walsall
possible future hospital experiences

Having read all of your horror stories about having to visit A&E departments and admissions to hospital for treatment for our loved ones, it is a terrifying thought that these situations are going to be common place. The Government bangs on about raising awareness for dementia and increasing funding for research, but the NHS, in my personal opinion, needs to give additional training to all medically trained staff in knowing how to empathise and deal with dementia patients and their carers, reducing the extra trauma and distress caused. On occasion when informing certain staff that my OH has dementia I have received a look of "sympathy" with could be associated with having been told that he has a common cold. More awareness is needed in all areas and the Alzheimers Society has done and is doing a tremendous job in their tireless work, and thank God for them, but the NHS needs to get on board.
 

Spamar

Registered User
Oct 5, 2013
7,070
Suffolk
Likewise, I have horror stories of taking OH to EAU, albeit at a hospital 40 miles away, they were on take apparently..... Though our local hospital, a mere 25 miles away were quite good the 3/4 times we attended, though there was definite improvement over the years.
 

Kjn

Registered User
Jul 27, 2013
5,835
And I'm really struggling with where dad is in a 'supposed' emi ward in hospital that was apparently having more staff ...1 sister , 1 healthcare I saw today with 24 patents
 

Ann Mac

Registered User
Oct 17, 2013
3,693
And I'm really struggling with where dad is in a 'supposed' emi ward in hospital that was apparently having more staff ...1 sister , 1 healthcare I saw today with 24 patents
That's appalling :( My Mil is also on an EMI assessment ward - at yesterdays visit, 11 patients, 4 assorted healthcare/nurses, 2 senior staff, 1 O.T., one activities staff and a ward manager. The two senior staff were mainly in the office, true - but they did pop in and out of the door regularly, seemingly just checking that all was OK. The worst I've seen was just 3 nurses/healthcare and 1 senior with 10 patients so even that is massively better than the scenario you describe :(