How will the professionals ever understand when they have this attitude?

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
I went to a meeting yesterday at the major hospital in this area. I had been invited by the local Carers official, as the committee did not have any carers on it.
The aim is that they meet every Friday for 1 hour in the afternoon, to attempt to improve hospitalisation experiences for people with dementia.
So far after 20 weeks of meetings they had come up with the idea of a "This is Me" binder to be completed by carer or PWD, to be taken with them into hospital - this was now being tested.
We had the usual rigmarole, of " Let's Go Round the Table and Introduce Ourselves" and without fail they were all smiling and saying " I am......., and I am glad it is Friday, it's been a busy week. I do........." I was near the end of the group, and said " I am........ I am a carer, and I don't care that it's Friday, because today will be the same as tomorrow, and Sunday and the day after that"

I got some really annoyed looks, and a deathly silence.

They asked me to share my thoughts on being a carer saying I had 20 mins. So I did - by they time we had done a flow chart of the admittance of a person to the hospital who had dementia - it was time to go round the table again for an evaluation of the session...

Coming home it struck me that they were all very worthy and dedicated, but had not got a clue as the the problems when a PWD is in hospital, and anyway, it was a nice quiet way to spend an hour or so, before it was time to leave on a Friday afternoon for their weekend.

Am I being too cynical?
 

karaokePete

Registered User
Jul 23, 2017
6,534
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N Ireland
Sometimes it seems to me that we can be victims of box ticking exercises and it make it all seem a little hopeless when it's been a bad day.

I have a memory clinic visit with my wife next week and the one thing that came out of the last visit resulted in the CPN suggesting she would so a specific thing that I was pleased about but it never happened. No doubt cuts and workloads are to blame, but it's soul destroying. It makes me wonder why I'm going to go next week!

At least you got to speak and it may have made someone think about things, even if they didn't show much interest in the meeting. Well done for getting involved.
 

MothersCarer

Registered User
Nov 13, 2014
72
0
Well done for going and for representing those of us who can't get the message over. My mother has just been through the hospital system supporting my mother who had a fall and broke her ankle. I was absolutely shattered by the lack of knowledge on the part of some of the staff and the expectations some had of my mother's "carer". I eventually said that I was not my mother's carer but her daughter who cares for her. I don't think they got it.
 

Alison N

Registered User
Jan 3, 2015
217
0
Surrey
Well done for going and for representing those of us who can't get the message over. My mother has just been through the hospital system supporting my mother who had a fall and broke her ankle. I was absolutely shattered by the lack of knowledge on the part of some of the staff and the expectations some had of my mother's "carer". I eventually said that I was not my mother's carer but her daughter who cares for her. I don't think they got it.
My husband has been in hospital for nearly a month with aspiration pneumonia. I was asked to fill in the ‘this is me’ folder for him. It is still at the bottom of his notes and as far as I know it hasn’t been looked at. Every time he has his medication they ask him his name and date of birth. Every time I answer that he doesn’t know them anymore. We are trying to get him mobile again. The physio’s say he is confused and can’t follow instructions so can’t get him mobile so they won’t try. He had no problems with mobility before he went into hospital. It seems that they don’t understand people with dementia.
 

kindred

Registered User
Apr 8, 2018
2,937
0
I went to a meeting yesterday at the major hospital in this area. I had been invited by the local Carers official, as the committee did not have any carers on it.
The aim is that they meet every Friday for 1 hour in the afternoon, to attempt to improve hospitalisation experiences for people with dementia.
So far after 20 weeks of meetings they had come up with the idea of a "This is Me" binder to be completed by carer or PWD, to be taken with them into hospital - this was now being tested.
We had the usual rigmarole, of " Let's Go Round the Table and Introduce Ourselves" and without fail they were all smiling and saying " I am......., and I am glad it is Friday, it's been a busy week. I do........." I was near the end of the group, and said " I am........ I am a carer, and I don't care that it's Friday, because today will be the same as tomorrow, and Sunday and the day after that"

I got some really annoyed looks, and a deathly silence.

They asked me to share my thoughts on being a carer saying I had 20 mins. So I did - by they time we had done a flow chart of the admittance of a person to the hospital who had dementia - it was time to go round the table again for an evaluation of the session...

Coming home it struck me that they were all very worthy and dedicated, but had not got a clue as the the problems when a PWD is in hospital, and anyway, it was a nice quiet way to spend an hour or so, before it was time to leave on a Friday afternoon for their weekend.

Am I being too cynical?
Thank you so much for going and representing us. Maybe next time take a small agenda with say, three points you want to get across. Get it copied at the hospital for each member or print copies so everyone has one. Take control, just like a business meeting. No, of course they haven't got a clue. Who has? Thankyou so much for all you do. Gxx
 

kindred

Registered User
Apr 8, 2018
2,937
0
My husband has been in hospital for nearly a month with aspiration pneumonia. I was asked to fill in the ‘this is me’ folder for him. It is still at the bottom of his notes and as far as I know it hasn’t been looked at. Every time he has his medication they ask him his name and date of birth. Every time I answer that he doesn’t know them anymore. We are trying to get him mobile again. The physio’s say he is confused and can’t follow instructions so can’t get him mobile so they won’t try. He had no problems with mobility before he went into hospital. It seems that they don’t understand people with dementia.
Yes, somehow we get pushed into being a non paid, full time professional carer responsible for everything. All sympathy. Kindred.x
 

AliceA

Registered User
May 27, 2016
2,911
0
Thank you for going, it is frustrating when it seem we talk a different language than the professionals. That is the paid ones, not us the true professionals.
Kindred is right, give each a bulleted list of issues.
How about a in the day of ............a timetabled list.
Another of time off. (Mine is nil except when I sleep! )
You may be a drop but drops wear away stone given time.

I was invited to a Brexit meeting by Andrea Leadsom as I had written about a concern.
I replied by writing about Caring, lack of services within reach and no transport.
Any opportunity............................drip, drip drip
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,445
0
Kent
I talked to a group of retired people about dementia. At the end of the session a man whose mother in law had dementia told me he had been sceptical about coming to the talk , thinking I would be a `professional` who knew the theory but had no experience of the practice. He was pleased I knew what I was talking about.

Well done @maryjoan in accepting opportunities to help people understand, however `professional` they may think they are.
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
@maryjoan you reminded me of many meetings I went to while still working in education. Lots of talk by well meaning people but short on honesty and rarely resulting in anything useful. No one wants to be the gloomy party telling it as it is so in your case it must have taken courage not to be brave and polite in order to let them go home feeling good.

I have my eldest daughter and family here with me on a visit and I don’t even tell her the reality as I don’t want to spoil her day. So she sees her much loved Dad in decline but has no idea what it takes just to get him through the day.

We need to be more open and honest.
 

Louise7

Volunteer Host
Mar 25, 2016
4,693
0
We are trying to get him mobile again. The physio’s say he is confused and can’t follow instructions so can’t get him mobile so they won’t try. He had no problems with mobility before he went into hospital. It seems that they don’t understand people with dementia.

My Mum had a fall and I was subsequently advised by the hospital OT that she wasn't 'engaging' with staff so they couldn't mobilise her. Despite walking well without aids on admission I was informed that she now needed a nursing home as she couldn't mobilise, was unsafe in a chair and needed to be hoisted. Mum became homeless as her residential home wouldn't take her back. The OT told me that it is common for people to lose the ability to walk in hospital and 'this was the best she was going to get'. When I advised the medical team that Mum appeared to be in a lot of pain I was informed that this was due to 'spending too long in bed'. They commented in their notes 'Daughter thinks she can gauge her Mum's pain better than anyone else'. When they eventually agreed to give her adequate pain relief Mum could walk again but they said that this was due to 'fluctuating dementia'. My request for an x-ray was refused. We now know that Mum has a spinal fracture.

From my experience hospital staff are very quick to 'write off' any problems in someone with dementia by claiming that they are due to the dementia. The hospital dementia team were very good but the medical team just ignored their advice. Mum is still in pain and is no longer able to walk. I hope that you have better luck than I did.
 

maryjoan

Registered User
Mar 25, 2017
1,634
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South of the Border
James ( my much loved foster child) had cerebral palsy. He was in hospital with pneumonia. I went home to spend one night with my other children. When I returned next morning another little boy was greatly concerned and told me that James had not had any breakfast.
When I investigated I was told that his breakfast had been put in front of him, but he had not eaten it.
When I remonstrated and said he could not eat it without assistance due to the cerebral palsy I was told that

" We are trained to make sick people well, not to look after disabled people"

James died when he was 13, and that was 23 years ago. Nothing changes.
 

Jessbow

Registered User
Mar 1, 2013
5,678
0
Midlands
I well remember turning up to visit my mother in hospital ( as I did daily) to find her dressed in someone else's clothes. She was a size 20, the cardi and skirt were a size 14. Did it not occur to anyone that the skirt didn't do up by about a mile?

I enquired who dressed her- found the male carer that had.

''She didn't say they were not her clothes''


I reminded him that she had dementia- he didn't know that either ( What a surprise!)

He promptly wandered over to her bedside and looked at the over bed table. ''You haven't filled in what you want for tea, naughty girl''


Dispair
 

Bunpoots

Volunteer Host
Apr 1, 2016
7,342
0
Nottinghamshire
That's unbelievable @maryjoan . Poor James! And how did the staff think he'd get better if they didn't feed him :mad:

Having said that the hospital staff told me that they couldn't get dad walking again because he couldn't understand their instructions @Alison N all except for one nurse who understood dementia as his grandad had it. He said all that was needed was to give dad time to move and he could walk perfectly well with a frame.
Dad's now in a Carehome and they were told he couldn't walk by the hospital staff who transferred him there - but he's still shuffling along when the mood takes him.
 

nae sporran

Registered User
Oct 29, 2014
9,213
0
Bristol
I went to a Dementia Friends session back in May last year, which is a great idea worth developing, but so many people there had no real understanding of how aware of the condition people with dementia are. One person did seem to take on board my concerns and more negative feelings towards the condition and the encounter, so hopefully I imparted something useful.

Keep plugging away Mary, and if you have the time then a few printed notes may help underline your message.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,445
0
Kent
He promptly wandered over to her bedside and looked at the over bed table. ''You haven't filled in what you want for tea, naughty girl''

The `naughty girl` is as bad as expecting your mother to discuss her clothes sizes, @Jessbow. It`s treating people with dementia like children on the one hand and expecting too much on the other.
 

Sirena

Registered User
Feb 27, 2018
2,324
0
My husband has been in hospital for nearly a month with aspiration pneumonia. I was asked to fill in the ‘this is me’ folder for him. It is still at the bottom of his notes and as far as I know it hasn’t been looked at. Every time he has his medication they ask him his name and date of birth. Every time I answer that he doesn’t know them anymore. We are trying to get him mobile again. The physio’s say he is confused and can’t follow instructions so can’t get him mobile so they won’t try. He had no problems with mobility before he went into hospital. It seems that they don’t understand people with dementia.

This sounds so familiar. My mother broke her hip and had hip replacement surgery in June. The nurses said she wasn't drinking fluids (they were expecting her to drink plain water, and weren't bothering to prompt her) and the physios said she wouldn't engage with them about mobilising. I took her a bottle of juice and she drank the lot, and the care home manager went in during a physio session and had her up and walking. Three other ladies on my mother's ward had dementia and the town has an elderly population so they must see multiple dementia patients every day, yet they seemed to have little idea how to manage them.
 

Sirena

Registered User
Feb 27, 2018
2,324
0
@maryjoan I think unfortunately these type of panels are often just box ticking exercises to make it look like something is happening. I spent yesterday evening with a friend who is on a monthly NHS panel made up of various types of health professionals, with him as the 'lay man' to give the patient's point of view. He said he is getting the feeling they all sit and talk but nothing would ever happen as a result of these meetings, and most of those present seemed to tacitly acknowledge that fact.
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
@maryjoan I think unfortunately these type of panels are often just box ticking exercises to make it look like something is happening. I spent yesterday evening with a friend who is on a monthly NHS panel made up of various types of health professionals, with him as the 'lay man' to give the patient's point of view. He said he is getting the feeling they all sit and talk but nothing would ever happen as a result of these meetings, and most of those present seemed to tacitly acknowledge that fact.
I totally agree with you on that- I feel like stirring htam up - after all they are being paid for being there - I am not!!! Yet, I am far more professional in my breadth of knowledge than they will ever be. And I have nothing to lose by stirring them up - as I have nothing anyway!!
On another tack.... what a beautiful day it is today - we are home, but I will go and sit in the garden shortly and wonder why that large poppy is flowering now at this time of the year - I have my own theory that it knows it will soon be 11 11 18
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
Oh you are so lucky to Have poppies growing. I see them in gardens but don’t have any after a purchase from Homebase wilted and died over the winter.
 

Sirena

Registered User
Feb 27, 2018
2,324
0
I totally agree with you on that- I feel like stirring htam up - after all they are being paid for being there - I am not!!! Yet, I am far more professional in my breadth of knowledge than they will ever be. And I have nothing to lose by stirring them up - as I have nothing anyway!!
On another tack.... what a beautiful day it is today - we are home, but I will go and sit in the garden shortly and wonder why that large poppy is flowering now at this time of the year - I have my own theory that it knows it will soon be 11 11 18

Definitely stir them up!
What a lovely thought about the poppy, I hope it's still in flower then.