I wonder if we have got this wrong?

[ishard]

I have read many threads over the time I have been on this site and I seriously wonder if we have got something basically wrong.

A person with any sort of AD etc has a brain disease which usually means that making decisions for themselves is either impossible or based on very screwed up illogical thinking. Dependant on how far advanced the disease is.

A lot of decisions thay make themselves are against their own welfare needs, (arguably self harm?) so why oh why are we asking people who are incapable of making logical decisions to make them?

The very nature of these diseases is that they CANT make logical choices.

Bare in mind here I was a qualified nurse and know about 'choice' for patients etc but its like asking a child if they want liver (good for them) or chocolate (not so good) for tea. Yes usually they are going to choose chocolate.

I know this is an ethical minefield but I do welcome input.

 

[gigi]

Morning Ishard,

That's a bit thought provoking for so early in the morning..and a huge question.

Am not exactly sure what you're asking..

From personal experience I've known for a long time time that Eric is unable to make decisions for himself...to the point now where he cannot decide what he should wear or what he would like to eat today. But I ask him the questions anyway even though I already know the answers..

Is it habit on my part? Or do I think it helps him to retain a shred of dignity and self respect to be offered a choice?

Don't know exactly what you had in mind when you posted..it's an interesting one..

let's wait and see what others come up with!!

Love gigi xx

 

[ishard]

Gigi from this site I see that the SS, MHN, CPNs, GPs, Nurses and Consultants always ask the patient for their decisions about anything even if the patient is incapable of realising the long term effect of the decision taken when clearly it would be better/more realistic to ask the carer.

Have they got it wrong in asking a person who isnt capable of making that decision logically about, and for, themselves or their welfare because of the disease they have?

If the patient then makes a decision that is against their own welfare is that then classed as self harm?

Is this another example of political correctness gone mad?

 

[gigi]

Thanks for clarifying, Ishard..

I wondered if that's the sort of thing you meant!

I personally haven't come across this..yet..but from reading posts here I realise it must happen..

And I agree it doesn't make sense to ask someone with reduced mental capacity to make a decision as to their welfare.

One of the problems seems to be that these people are so bound by ..not just political correctness..but things like human rights, data protection.fear of litigation,patient choice ad nauseam..that they lose sight of the reality of the situation..and often don't realise that in asking the patient..they make life more difficult for the carer.

I think you've raised a very valid argument here!

Love gigi xx

 

[ishard]

Gigi sorry to have this 'add on' but to use your example of clothes I will explain further is I may?

If a nurse asked your hubby what he wanted to wear to go out and it was snowing hard and hubby replied that he wanted to wear his swimming trunks and flip flops then technically that is what the nurse has to dress him in because its hubbys decision.

Nurses dont of course do this with clothes, they would dress hubby in appropriate clothing for the weather but they do do this with decisions about meds.

Which is more important? meds or clothes?

BTW Im in Melton

 

[gigi]

Hello again Ishard in Melton..you're not too far away from me!!

I know what you're saying..but it's such a broad question..there is no single answer, is there?

Forgive me but I have as yet no experience of this sort of care from my own viewpoint as Eric hasn't had to have any hospital/NH input as yet!
I'm a retired nurse too, by the way..
From a professional point of view I would hope that the nurse would offer holistic care..so would look at the patient and the situation as a whole..as we were trained to do.The nurse was the patient's advocate..and worked in the best interests of the patient.

Sadly..from what I read on here..it doesn't seem to happen that way any more.

Love gigi xx

ps. Eric's cousin from France has been staying with us. The first thing she asks for when she arrives is..A Melton Mowbray pork pie....

 

[Grannie G]

Hello Ishard.

There are decisions and decisions.

I was told by an advocate from Carer`s Voice, that I listen to my husband too much. I was offended.
She was seeing it with regard to my welfare as a Carer. I see it from his position as someone with Alzheimers fighting to cling to the last vestige of his independence.

My husband has gone out in the winter without a coat. It was cold outside but warm inside and his dementia prevented him from realizing the difference. But he didn`t get very far without his coat, and soon was home again.
Only once, when he was in a state, did he stay out, just wearing a jumper, but he came to no harm.

Should I have locked him in, I don`t think so.


The same with his medication. he had a period of throwing it away or hiding it. It was his choice. Then he complained of feeling ill. I told him it was because he was refusing his medication. It probably was not the reason, but he now takes it willingly.

He is unwilling to go to day care. Should I make the decision for him? I know if I did he would refuse to go.
He is unwilling to have a carer in. Should I force someone on him? If I did he would walk out of the house.

There must be a happy medium somewhere.

If I, as a Carer had a real cause for concern I would hope to work with the professionals, behind my husband`s back if necessary to arrive at the best solution for myself as carer and my husband as cared for.

But it all depends on the stage of dementia, the degree of challenging behaviour, the additional responsibilities of the carer, the relationship between the carer and the cared for andwhether or not the carer can manage the physical and emotional demands.

And I suppose this is why, ishard, it is impossible to say what is right and what is wrong.

 

[ishard]

No there is no short answer to this and not every size fits everyone

Yes Gigi we are all trained to be the paitients advocate but more and more that isnt happening in real terms and I truly believe that with the cloud of litgation, human rights etc too many professionals are now striving to watch their backs and not act in the best interests of the patient.

I would love to see the holistic approach to any form of AD, then everyone involved has input and decisions are not just left to the patient who may be incapable of making an informed decision.

We can dream cant we?

 

[Mameeskye]

I found this concept to be strange when talking to the staff in Mum's care home. We agreed that much of the legislation had probably been thought up for adults with mental health problems, e.g. depression but who had not lost cognitive thought and rationality.

As a Mum to toddlers at the time I found it sad that under the current legislation that staff could not do what was best for my Mum if she refused (I had a Welfare Power of Attorney, so was allowed to make decisions in her best interests up to and including syringing fluid into her mouth during a UTI. Policy prevented staff from doing this as the patient has no option...I soon showed them that she was thirsty, wanted to drink and was just too weak - she survived anotehr 18+ months) but that if they had been caring for children there was a chance that they could be charged with neglect.

As to choice, I give my toddlers choice to allow them to learn to make decisions and feel empowered. But the choice is generally two safe choices. I frequently feel that providing Mum her medication in food was not a problem (where that medication was in her best interests), allowing her to feel chilled and letting her decide to put on a coat when this was the case was not a problem (though generally it was trying to get clothes off ehr wehn hot that was the problem!) etc. etc.

However unfortunately there are some for whom common sense is over-ridden by poitical correctness. Fear of litigation etc. seems to run rife.

 

[TinaT]

On the elderly mental health ward I have seen a patient with the most horrific looking head injuries. He continually fell and continually hit his head so badly that for weeks on end he was continuously covered in horrible bruises and large swollen lumps. I asked the staff could he not have protective headgear such as cyclists wear? The answer - we are not allowed to do so!

Eventually his large family took him home and decided to care for him between themselves.

Another patient continually managed to shuffle himself out of his chair (he couldn't walk) and suffered horrible injuries. The ward does have tables with a half circle cut out and I asked could one of these not be used to help to keep him safe? The answer - no we are not allowed to!

Last week a resident at the home refused to take medication. I asked would they crush it into her food or onto a sweet treat such as a chocolate so that she would take it? The answer, no we are not allowed to!

Reading TP posts helps me to be aware that there are cases (rare thankfully) which still do shockingly use methods of restraint in a most terrible, cruel and abusive way.

I'm not sure how common sense measures which are for the protection and comfort of dementia sufferers have reached the point where they cannot be used. I can clearly see a difference between on the one hand abuse and neglect and on the other where protective measures are needed.

As previous posts have said, the area of refusal to accept or do something which is seen as both protective and necessary is a minefield.

xxTinaT

 

[SharonLyons]

While looking to have my mum placed in a care home, I was told by a visitor from the Alzheimers Society, a mental health nurse and my mum's GP along with family members and friends, that she was at very high risk and needed 24 hour care. SW insisted that mum be asked if she would like to go into a NH and she immediately got into a temper saying there is nothing wrong with her and she can manage perfectly well by herself. Sadly, mum doesn't ever change her clothes unless prompted, is not sure where the toilet is, leaves her back door unlocked every night, lets strangers in her home, can't even get herself a drink of water, doesn't know how to use the phone......shall I go on! How can she possibly understand why she has to have 24 hour care. Apparently, Social Services can't make dementia patients go into a home against their will. I didn't think there were any rules in dementia. I was also told by SW to take mum to visit some care homes to see if she liked them!!!!! Yes she likes them if she thinks it is just a place where she is visiting a friend of mine for a 10 minute cup of tea before going home again! Important decisions like this HAVE to be made on behalf of the dementia sufferer, for their own safety.... I would have thought that is a basic human right in itself.
Sharon

 

[germain]

I agree with you Ishard

Hi Ishard,

You've hit the nail on the head. Dementia suffererers - when they get to a certain stage (but obviously not all at other stages) cannot be said to be able to give "informed consent" re any decision. This is one of the key phrases used in the Mental Capacity Act. Ditto the reverse is true re "informed refusal"


We used this phrase a lot when dealing with pro's who were trying to get out of their responsibilities re our Mum. When she refused to take medicine we gave our consent for it to be hidden (pending the GP prescribing in liquid form if poss.)
When she came out of hospital with horrific bedsores but refused to get out of her bed we physically lifted her ourselves and gave others permission to do this as well.


When she finally had to go into full time care but we knew she would kick and scream all the way - it was our lovely District Nurse who said to us that regardless of her feelings she was at risk and needed a "place of safety"


I think some of the pro's do get dementia mixed up with some mental illness which may "clear" after some treatment - that is why they are always trying to cover their backs in case they get sued ( but I've never yet seen a dementia sufferer who is so far down the road that decisions need to be taken for them on Health and Safety grounds that has has the capacity to sue !!! )


Only my opinion but I thought in our experience that the Human Rights issues and the Mental Capacity act issues were generally raised by people too lazy to do their duty and wanting a cop -out.


Reards
Germain