Views on hospital care for people with dementia?

[beech mount]

Thank god(or anyone else)my wife will be back home tomorow morning!!! never again will she or i go through that again.

I managed to get SS and OT working together and treating her as very urgent.
John.

[Notwaving]

My mother has been in Hospital as an outpatient with no problems while I'm there. She has been admitted in an emergency 3 times. What a nightmare. she has recently broken her wrist, we had it plastered after a 5 hour wait and took her home.No way would we ever leave her in Hospital again.
Her last stay was terrible. From one shift to another they did not exchange info. I had asked for a sign above the bed to say partially sighted.Help with eating , meals left uneaten.I found her pockets filled with her tablets. I had told staff not to leave the tablets in a cup for her to take as she hides them.
I had a phone call at 10.30 at night to say Mother making a fuss could I come and sort her out.I arrived to find her in great distress still dressed in day clothes and smelling of urine.
I could get no joy with the nursing staff (most of them hiding out the way)The sister appeared and said she has been terrible. I said 'what would you do if she had no one' she couldnt answer that. I put her in a wheelchair and took her home.
The sister ran after me saying i would have to wait for the paper work. I told her to post it.
I know the staff are overworked but they don't seem to have a clue about Dementia.They were asking Mum stuff she had no hope of answering.I think there will always be a problem putting people with Dementia in with non Dementia patients. I think they get lost in the crowd.

[Tender Face]

John, thrilled to bits at your news. Didn’t you mention on another thread there was ‘no chance of recovery’???? - look how your hard work and fighting has paid off. ‘Good on yer’ for getting where you are now and much love and best wishes for a smooth transition home tomorrow…..

Which is I suppose, is a lot of the feeling on this thread - certainly from me ….. We really shouldn’t have to ‘fight’. Once upon a time, hospitals were seen as a place of care and dedicated staff … now it seems some patients are just part of some bureaucratic cycle in the name of medical intervention …. and all we strive for is to ‘get them out of there’ and back into places of care and TLC - be that home or NHs/CHs …… and if they can’t speak up for themselves what chance …????

Honestly, my heart goes out to everyone here who has posted ….. and just despair so many have such sad tales to tell ……

I do hope it helps people like Rachael to help us all make a difference ….

Love, Karen, x

[beech mount]

What i think is that all you need are nurses with compassion,
they will understand what is needed.
For the ones that need "re education" it should be done as it used to be done in Russia.
John.

[RachaelK]

Dear all,

Thank you again for all your very helpful and honest responses.

I’m extremely sorry to hear that so many of you have had such bad and distressing experiences. As MaryW points out, it sounds like experiences even within the same hospital can be incredibly varied, and even wards that might be expected to provide better care (e.g. geriatric wards) are often not managing to do so. John, I am really pleased to hear that your wife is due home today, that must be an incredible relief to you. I hope that by the time you read this you and your wife are back at home together :-)

From what you have all said, it sounds like there can be problems in many areas of care, including: eating, drinking, toileting, giving of medication, high levels of distress and increased confusion in the person with dementia (& distress to carers as a result), a lack of understanding of dementia, and a sense that some staff feel resentment and intolerance towards patients with dementia.

In terms of what might help to improve the problems above, it seems clear from your responses that training and compassion/understanding from staff is very important. However, many of you have also emphasised the difference that better communication and closer working with yourselves as carers would make. A few of you have been lucky enough to experience this kind of involvement, but for most this has not happened. You’ve instead faced little or no interaction/communication between yourselves and staff, information and contributions from yourselves appearing to be ignored or even resented, restricted and strictly adhered to visiting and meal times, and having to, as Karen summarises, ‘fight’ (e.g. by being firm, barging in and resorting to writing) to have any input into your relatives care.

The big question I am left wondering is, WHY is it that so many of you have not been involved in the care of your relative, despite the many positive benefits that this could bring?

I think we may have touched on a few potential explanations - perhaps poor understanding of the needs of people with dementia, overworked staff, and possibly the influence of senior staff such as consultants? I will be posing the same question to staff who are going to be involved in my research, but wondered if anyone had any more thoughts on why the involvement of carers is so uncommon?

With best wishes,
Rachael

[maryw]

Dear all,

wondered if anyone had any more thoughts on why the involvement of carers is so uncommon?

With best wishes,
Rachael

Fear of lack of control on the part of the hospital? My Mum's ward was run by a very austere Staff Nurse, who communicated by turning her back on you or walking in the opposite direction? Lack of training in communication? Fear that they would be criticised for not providing appropriate care? Viewing people with dementia as not having emotional needs and seeing them only as "confised" so therefore only requiring care that ticks the boxes on the charts? There again, that's brought up another thought - TICKING THE BOXES - Care has stopped becoming individual.

You would think they would be grateful for you shouldering some of the care, providing emotional support to your relative in the hope of achieving an early discharge??

[RachaelK]

MaryW and Karen, you made a couple of other interesting points that I forgot to mention in the above:

Mary, you mentioned the possibility of inspections of all dementia wards. Whilst unfortunately I can't tell you that this is due to happen (as far as I know), there is a nationwide audit of dementia care in all general hospitals in England & Wales that has just started. Some of the information they are collecting is from medical records but they are also going to be doing some really detailed work in some hospitals to look at the experience of being in hospital from the perspective of the person with dementia. This information is going to be fed back both to local staff but also at a national level. As it's a national project it may well have a better chance than many projects of making a real difference - lets hope that is the case. Here's a link to their website if anyone is interested in finding out more: http://www.rcpsych.ac.uk/quality/qua...fdementia.aspx

Karen, you highlighted two interesting areas, the impact of patients with dementia on other patients on the ward, and the impact on/responses of staff. Another researcher where I work is running a project to compare experiences of hospital care between patients who do and do not have dementia. If you don't mind, I will pass your thoughts on to her, as I think she would find them very useful.

All the best,
Rachael

[Starshine]

Hear Hear to Normms and all your comments

I found this really interesting and also made me absolutely furious too, and would also like to be involved or emailed with further info.

My involvement with hospitals with MIL and Alzheimers, was horrendous, they just drugged her up to keep her quite, she was wheelchair bound, what could she do?? Food is never helped with in my opinion, nurses often have no idea of the problems with dementia based illness, and as far as I have seen, show no inclinations of wanting to learn anything either, this may sound really harsh, and I know there must be brilliant caring nurses out there, but I heard one comment on another lady in the hospital, she must have been late 90's, and the nurses were really angry with her, and shouting and hollering to her and each other saying 'wheres her damn carer? she should be here with her the whole time' Well 'Hello' we do have lives too, and if caring is not given happily in hospitals these people should not be in this profession, I want to help, I want to be involved with my loved ones care, I want to be talked to and not be found to be in the way or interefering, some attitudes are absolute **** - 'THEY' do not always know best, I with my little knowledge have often more idea than some of these health workers, have even found in care homes some have little knowledge of the dementia illness or how to cope - TRAINING TRAINING TRAINING - PLEASE. Dementia's can be managed can be helped, but can also be badly aggreviated by lack of care or knowledge. If some of them just listend to us who live with this horror they could learn so much themselves. Maybe their time will come with their own loved ones, and they will learn the same way we have had to.

Oooops I had better stop ranting now, before I burst a blood vessel myself.

Good luck with your research good to know people out there care.

Starshine x

[beech mount]

Still waiting,
I was promised that my wife would be home between nine and ten this morning so there was no need to go to the hospital,seven hours later i am still waiting!
They phoned me at nine am saying "come and get your wife"
on the bus i said? o you should have asked for an ambulance,i did, let me check,no record of it ! we will book one now.
Seven hours later i am still waiting,what my poor wife is going through i can not imagine,i feel i have let her down so badly.I am starting to think they are doing it to punish me for complaining.
John.

[RachaelK]

Hi,

Just time for a quick reply to say John I am so sorry to hear that today has not gone well. What a disappointment after you thought everything had finally been sorted.

One thing is for certain, it is in no way your fault. From what you have said you have been doing everything possible to sort things out for your wife. I'm sure that, despite the extra delay, when your wife does get home she will just be very pleased to see you & to be in familiar surroundings again.

Best wishes,
Rachael

[beech mount]

Latest information from the hospital is that it could be 10pm before they can get transport,what state will she be in by then?
Dementia care? what care.
John.

[Norrms]

I am so sorry to hear this John and your dear wife must be frantic, dont ever apologise for complaining, in fact do it all the louder till you get your message accross!! I hope and pray tonight this nightmare will come to an end and you will have your dear wife home with you. Best wishes, Norrms and family


P.S. The tip about the weights on the end of carrotts, would that be old fashioned lbs weights or Kilo`s ???

[kassy]

My experience of mum being in hospital when she first had dementia is basically lack of common sense by every doctor or nurse that saw her.

I've held back from replying to this thread but can no longer.

Mum took herself to hospital regularly saying she was ill.

The staff would ring me every time and say "what can we do with her,shes driving us mad because theres nothing wrong with her."

I of course told them there was something wrong with her ie.dementia but they weren't interested.

It scares me to death that doctors and nurses(some)know nothing about dementia.

Perhaps they should be trained through this site maybe they could learn something.

[Izzy]

Oh John that is so awful. I hope she is ok when she gets home.

[beech mount]

It gets worse,
As you i can not get down to the hospital because i do not know when they are bringing Mia home i spoke to a friend who said he would pop in and see how she is,well,she can not stop crying and thinks i have abandoned her for good,the staff do not seem bothered but he will stay with her untill the ambulance comes.
This is breaking my heart and i feel so helpless.
John.