Hospitals - Please talk to us

[sunny]

Could I make a plea from all relatives of people with Alzheimer/dementia that all health professionals keep a dialogue with the nearest and dearest rather than try and cut them out of the loop, which is sometimes the feeling I have had especially when my mum has been in hospital. She cannot understand what is going on so cannot let me know so I need someone to tell me what is going on with her care. So often I have felt like a spare cog and despite trying to find a member of staff to ask have felt as if I have been "fobbed" off. Also you would find out some valuable history of the patient if you would just ask those caring for the relative. Do any other relatives of people with AD feel the same, if so, please join me in this and let the professionals know your experiences! We are made to feel as if we should not ask any questions about the treatment and care so why is this?

 

[May]

Agree with all of the above after a bad experience recently when my Mum was admitted with a heart attack. No complaints about treatment for the medical condition, that was superb in fact, but dementia patients requirements are quite different to a 'normal' patient. Carers of these patients need to be listened too CAREFULLY.... A suggestion would be on the admission notes for patients in this situation, a 'flag' to indicate Alz/dementia and basic questions such as

Drugs specific to condition, why & when taken

Does patient need reassurance

Can patient understand and/or retain information

I could list many more, but these three alone would help enormously if acted upon. None of us want to treat our loved ones disrespectfully or like children, but they CANNOT make their wishes known, are often confused and frightened by new situations, and very often DO NOT know what is in their best interests. Hospitals and medics need to use real communication with carers, I'm sorry, this is a time to forget the old stock phrase 'i can only discuss this with x,y or z.' and 'i can't force a patient to take u, v or w.'
Hoping someone out there listens

 

[MrsMoneypenny]

Hospitals don’t get me going on that one !

My Father in Law was taken in to hospital after a collapse due to high blood pressure. He was taken to A & E by ambulance my partner went with him. When I arrived at A & E they had Dad hooked up to a heart monitor and were monitoring him for about an hour. Within that hour Dad perked up almost back to his ‘normal’ self. After about three or so hours it was finally decided they wanted to admit him for more tests they suspected a TIA. So off Dad went to a geriatric ward. By this time it was early evening bearing in mind he had been taken in at around 10:30 am. Settled him in as we thought.
Get home having first meal of the day phone rings. Dad had got confused and got up, dressed and packed his bag and left the ward. A nurse followed him but was unable to restrain him “rules” they said !? They retrieved him from the hospital grounds with the help of the police as they couldn’t do anything !?!?! Who escorted him back to the ward. We were called again and asked to speak to Dad to try and calm him down as he was about to do the same thing. My partner tried and said “ Dad your in hospital your not well” the stern answer was “NO I’M NOT !” and then the nurse again because he tried to put the phone down. We were asked to go over and try and calm him down as the phone idea didn’t work. And the only Doctor on call was busy. So, off we go at 10pm when we arrive he was tucked up in bed with a bored looking nurse sitting at his side on guard I guess. The doctor had been and given him a shot to calm him as he had tried to leave and the police got involved again. They had absolutely no idea how to deal with someone with AD. The next day he was due to have a 24hr heart monitor and various other tests. But again we were called as he wasn’t cooperating. When we arrived he was sitting in the corridor in his Pjs with two nurses trying to convince him to come back to the ward apparently he had been there for ages and nothing would move him. So, I just said “come on Dad back to bed “? “Yeah alright then” the nurses faces were a picture and the how did you do that question came up. It turned out they wanted us over there to actually take him home as he refused any tests and was being so awkward. We can’t make him do anything they said. So, he is now having the tests with his GP who knows him well and how to deal with him. Hospitals need to train their nurses on dementia care and listen to the carers. Dad was asked in A & E how he felt and his reply was as it always is when asked “ I’m absolutely wonderful” even though 20 mins ago he was unconscious and they took his word for it until we took them to one side and said “you do know he has AD don’t you “ ?? “Oh right “ !! Should have known from the notes one would have thought especially if you had read them. All said I must say the medical care was good. I just worry for people who don’t have a voice to help them.

Naomi

 

[Lila13]

Yes, I agree, how do we get through to them, especially if someone is sent to a hospital too far away for regular visiting?

I was appalled by the way my mother and I were both treated in the hospital where she died. I don't suppose the hospital staff took any notice of the letters I wrote to them afterwards either.

Lila

Could I make a plea from all relatives of people with Alzheimer/dementia that all health professionals keep a dialogue with the nearest and dearest rather than try and cut them out of the loop, which is sometimes the feeling I have had especially when my mum has been in hospital. She cannot understand what is going on so cannot let me know so I need someone to tell me what is going on with her care. So often I have felt like a spare cog and despite trying to find a member of staff to ask have felt as if I have been "fobbed" off. Also you would find out some valuable history of the patient if you would just ask those caring for the relative. Do any other relatives of people with AD feel the same, if so, please join me in this and let the professionals know your experiences! We are made to feel as if we should not ask any questions about the treatment and care so why is this?

 

[nicetotalk]

When my mother was addmitted in hospital befor she died the nurses did not have a clue about alzheimers patients. Its as if they just did not care, when she was takin in hospital she was so thin, because of her illness and the day befor her doctor told us she did not have long to live. The nurses thought she had been starved or something. They were cold, never comunicated with us or anything. We felt like we should not interupt them as they always seemed busy. Yet here lay our mum dying. When we asked a nurse we think she is in pain as she was making noises he said, with his arms crossed well theirs pain and then there is discomfort, she had not eaten the drip of fluieds had been taken away and she was dying. Its not until the main doctor came round and said someone had noticed she was making sounds(yes sounds of pain) only then did they say she needs morphine. After her main doctor on one of his visits said the drip has to come out its causing fluid to build up her lungs taking into account she had not eatin for a while my sister was worried she might be hungry. The doctor assured us she does not have that sensation anymore. So you can emagin how we felt when a nurse happly said to us (my god she nearly bit my finger of ill go and have a word with the speech theripists to see if she can have something to eat. I told the doctor and he was fumeing it was bad enough watching her die knowing she had not eaten and had not had fluieds for days but for a nurse to say that. WHAT happend to careing nurses i will never forget the experience in the hospital.

 

[Lila13]

The ward where my mother died specialized in elderly patients with mental health problems so I thought at least there they'd know more about it. They also accused me of starving her. Obviously had no idea how much food there was in the house, how much time I'd spent trying to get everything she might eat, and there were 3 carers a day whose main job was to try to make sure she was eating and drinking.

I don't know why they didn't put her on a drip.

Lila

 

[kezzer]

I am an RMN jnr sister and i quite agree RGN's simply are not qualified to deal with these situations thats why we do an extra 3 years on top of medical training and i believe all RGN's should do some sort of mental illness training it would save alot of situations that they come across with AD patients if they just had a simple understanding of the illness.

 

[kezzer]

sorry lila13 i was just reading your profile about cause of death, sorry about your loss, but you dont die as a result of dementia it is an illness that you live with.

 

[janey21]

hospitals argh!!!!!!

hello all

i completely understand the problem with hospitals. my grandad (whom me and mam are main carers) was in a few weeks ago and doesn really talk much now, only to me and mam. so the level of conversatin he has with other people is very very limited. he has quite complexed needs (as do most AD patients) such as pressure care mattress, (as he not mobile anymore) soft, but not mashed diet (swallowing impairements follwing many TIA's due to his vascular dementia) and the hospital staff just dont underdstand. me and mam were up every day evey shift taking turns in order to make sure he got fed and was rcieving right treatment. the nurses dont know how to react to a patient with dementia and they often get forgotten about. one day i went up to see a NIL BY MOUTH sign above his head. immediately i got the shock of my life as all i know from NIL BY MOUTH is when paople are having an operation. so i asked what was the matter and one of the nurses who didnt speak alot of english explained that he had aspirated when they tried to feed him (ie he had coughed and spluttered) i know that this was down to him not sitting upright and the nurse knowing what she was doing. i explained he has a soft diet and they didnt understand so i took the sign down and gave him some breakfast which i may add he ate lovely. the nurse put the sign up and i was very upset by this because wht 81 year old man shoul be refused the right to eat? i explained to my mam what had happened and she came up to spoeak to them. they then obviuosly realised what my mam did for a living (she is a forum support officer for public and patient involvment in health covering city hospital trusts and primary care trusts) and they were nice as anything and even the matron came to see us. would this have happened if my mam was just joe bloggs??? i dont know but its not fair and i agree that hospitl staff need training on dementia patients in order to provide the full care that they deserve.

jane x

 

[Brucie]

The problem is that the staff have a limited time and feeding patients takes up too much of that, so they just shovel food in regardless of whether the person can breathe or not, or whether the food is going the wrong way.

If they only had enough time, everything would be fine.

One issue is that the staff often do not think of the person as a person, but as a thing that has to have stuff pushed in.

and that is even in the best of places!

 

[Lila13]

I think some do die of dementia but that is only in the last stages, my mother was not at that stage.

Lila

sorry lila13 i was just reading your profile about cause of death, sorry about your loss, but you dont die as a result of dementia it is an illness that you live with.

 

[Brucie]

result of dementia it is an illness that you live with.

Often quoted is this one and, perhaps from a strictly clinical viewpoint, it may be true.

Same as if one day I step in front of a bus. Cause of death might be decided to be multiple injuries as a result of a road traffic accident.

But it would have been the original action that caused the accident. But the original reason might have been stupidity, absent-mindedness, depression, a trip on a pavement slab, a push from behind, etc.

Clinical viewpoints need to be tempered with sense. In my book, if someone has dementia and that affects their immune system and as a result they get pneumonia and die from that, I'd be looking back down the chain and saying it was the dementia that was the root cause.

Just my view of course....

 

[pembie]

Death Certification

Death Certificates give the doctor the opportunity to put down the immediate cause (eg pneumonia), underlying conditions (eg demetia, cancer) and associated conditions (eg thyroid ).

Often they will put only the immediate cause, or add another underlying condition, omitting the dementia, possibly in a misguided attempt to save the feelings of the bereaved, but thus endorsing the stigma of dementia.

 

[nicetotalk]

Hi pembie,
I know when we went to pick up our mums death certificate it just said(end stage dementia) i remember feeling so mad about what they had written. After what we saw our mum go through in hospital no food, no fluied how did she die, did her heart stop, did her organs fail, put it this way the lady at the town hall would not except this as a cause of death we were puzzled we again had to wait and come back so someone could ring the hospital to find out just what was the casuse of death. We went back a few days later to register her death and the same thing was put on the death certificate end stage dementia she said the coroner had excepted what the doctor had told him. Y et we never got to know but i think it would be to traumatic just to read what it was she actually died of.

kathy

 

[Lila13]

I don't think the doctors knew what my mother died of, they only knew she had dementia so they put dementia on the certificate.

No-one seemed to think she was dying when I phoned the day before.

Lila