are all hospitals bad for people with dementia?

[peppa]

hello, i'm new, but have been reading this site for a few days, since it was confirmed that my mum was not 'temporarily confused', as we had been led to believe, but had progressed in her vascular dementia.

it has been a very painful experience, seeing someone you love being ignored and humiliated in hospital (she's been there 3 weeks after a second incident of low sodium leading to confusion) and having to come to terms with the fact that she will never be the person we knew again.

in some ways it has felt like a bereavement, yet she is still alive, and amazingly she can even be cheerful some days. she thinks she's on a journey (boat/train) and about to come home (though very confused about this, thinking she lives in yorkshire where she was as a child, not london). but some of the worst of all this has just been seeing how the nurses (not all of them) treat older people in hospital.

people with dementia seem to be ignored, almost treated like naughty children. getting information out of doctors has been absurdly difficult, and as no one there knew her from before and she was already labelled with dementia (mild) it seemed there was minimal interest in finding out if she was significantly more confused or not. it has only been the persistence of her family that has made them pay some attention (as it is clear that we now have to find her residential care).

it makes me feel angry that people with dementia are effectively disempowered, having no control over their stay in hospital and no understanding of what is going on. moreover, close relatives have to beg for information, and not once has anyone approached us to ask about her condition or update us on their theories/investigations. surely there ought to be a better system for treating distressed dementia patients and their carers...

is there something we should be asking for and don't know about??

peppa

 

[susiewoo]

Ask for a meeting with the consultant and take several family members with you..get one to take notes. Before the meeting write down your concerns and questions to refer to in the meeting. Is she in a general hospital or psychiatric unit?
Ask to be refered to the memory clinic which will be run by the psychiatric dept.
Don't let her be discharged home until properly assessed.
Speak to the patient liason person (PALS) usually a great source of knowledge. In my area there are mediation/advocacy services which may be useful.

 

[jenniferpa]

As I read your post I was nodding my head: every point you raised I have found to be true. The only bright spot was the PALS department, so I would echo Susiewoo's suggestion.

Jennifer

 

[Skye]

Hi Peppa

Sadly, the way your mum is treated in hospital is all too common. I'm working with a group in our area to improve things, and we're slowly making progress, to the extent that the local nursing college is now including a module on the treatment of dementia patients in hospital.

You may be interested in an article I prepared with the help of TP members. Some people have printed it and given it to the ward when loved ones are admitted. You might like to take a copy to your meeting. You can find it at:

http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=4818

I hope you manage to get something sorted out.

Love,

 

[peppa]

thanks for your replies. i can see this is an issue that must have come up before, and i will take that sheet to the hospital. it's clear that nurses do have a lot to do, as do doctors, but it's just the details - like a smile - that make all the difference! and the distress caused by being ignored all the time is tragic to witness.

 

[mojofilter]

Same here I'm afraid, my mum's condition deteriorated dramatically during her last stay in hospital. She was on a medical ward and the staff there didn't have the time or the training to deal with her dementia.


Paul

 

[Sharon G]

Hospital Hell

Sadly, this seems to be the case with all the relatives I have ever spoken to who have had their loved-ones in hospital. I can only concur with the other messages - speak to PALs and insist on meeting with the consultant in charge of your relative's care. In my experience, it is worth stamping your feet, it is the only way to get things changed. If all else fails make a formal complaint - it is well worth the time and effort if it brings about changes for those that follow. Good luck!

 

[mojofilter]

be careful what you talk about

I've just had a phone call from my mum's nursing home informing me that she was pushed over this morning and has fractured her hip ..... So she's now in hospital

I'm just going to go and see how she's doing, let's just hope that it's not another horror story in the making ..

Peace,

Paul

 

[Skye]

Hi Paul

So sorry to hear that. Let's hope the potential horror story doesn't materialise.

Keep us posted.

Love,

 

[jenniferpa]

Oh dear Paul, I'm so sorry to hear that.

Keep us psoted

Love

Jennifer

 

[Grannie G]

Dear Paul,

Sorry to hear about your mum. I hope she`ll be in a hospital which is able to care for her properly.

 

[Lonestray]

Sad fact

Over the past year my wife has had four seizures and was rushed to hospital.

The first time I was not allowed to enter the area they were treating her and was left pacing up and down. They kept her in over night. When I visited her she was not eating, so I took on the task with no problem.
I asked to see the head man and told him my wife's history and stated I wanted her home that evening. They brought her home and handed me a bag of her clothing which was cut to bits, and told me to keep the gown she was dressed in!
The following day I returned it to the hospital, good house keeping.

The Doctor seeing her condition asked how I managed to care for he. He called over a young female Doctor to listen, as I explained about Alzheimer's at some length. Shaking my hand he thanked me for sharing the information.

The next three visits to A&E I insisted on being present with Jean at all times. Once I explained the problem and the benfit of my presence, not only was I welcomed, but the lady Doctor explained the probable couses of the seizures and how they might be trickered in the brain. I thanked her profusely for her help, her answer no, it's I who thank you for giving me such an insight to AD!

Those last three visits I had her home the same day. Touch wood no more seizuers since Feb.
After my earlier experiencies with hospitals some five years ago I now have no fear of explaining why my input is so important, I know her best.

What a pity Doctors are not directed to TP to learn the importance of the carer.
Padraig

 

[Lila13]

I think my mother's local hospital was generally OK, but not the one to which she was sent in the end. (But of course my response is determined mainly by the fact that in the original hospital she recovered and was sent home, and from the last she didn't and wasn't. And of course I don't know if that was the hospital's fault.)

In the first hospital she was moved through 4 different wards, with very different attitudes, and inadequate communication between them, but coped.

 

[mocha]

Hospitals and Dementia

I'm afraid mine is a tale of woe as well. My husband had a slight heart attack in 2003, not long after his diagnosis for AZ.
While on the ICU everything was fine expect he kept pulling out his IV tubes. It was when he went on the general ward that the trouble started.

I received a phone call to say he had been violent and could I go in.. He was sat on a bed in a single room with 3 hulking security guards stood round.

It seems he had hit out at a male nurse and the tale was that he had wandered out of the ward and down the corridor to get out and had lashed out when restrained. It was then I noticed that he didn't have an ID bracelet on his wrist.

What would have happened if he had got outside I dread to think.

The outcome was that he kept the single room for the rest of his stay and I could go in anytime I liked.. I used to stay until he was asleep before I left.

The trouble is that General Nursing have no idea how to handle Dementia patients

Our local AZ society are trying to get a trained dementia nurse on each floor which I think would be a good idea

A .

 

[Lila13]

We were never given any choice, in fact I think it is only healthy people with minor things wrong with them who get a choice.

And there wouldn't have been enough space for any of us to stay in with her.

In the first hospital there was no need for anyone to stay, she'd look at the clock and tell us when to go, knowing when it'd get dark.

I didn't see the A & E place, they were very bossy on the phone, couldn't take in the distance and the fact that I didn't have a car (so couldn't just pop in and fetch her in a few minutes).

I wish I had stayed in the last hospital, but couldn't have known. Yes, she had a single room but it was a tiny cubicle, not even room for a chair.

That last ward was specifically for elderly patients with mental health problems.

Lila

 

[mojofilter]

I received a phone call to say he had been violent and could I go in.. He was sat on a bed in a single room with 3 hulking security guards stood round.....

I had exact same thing happen to me, I ended up spending days on the ward caring for my mum. Unfortunately she's in a different hospital this time and it's not as easy for me to get in and see her this time.

She's still waiting to go down for her operation and she could end up being there for 8 weeks. Which is not good news..

Looks like it's fingers crossed time..

Paul

P.S. I'll post further updates in a new thread, I don't want to hijack this one