11 replies to this topic

[Tyni]

I am married to a ventilated tetra...who can talk and with nothing at all wrong with his mind. He is fully compus mentus! Last weekend he was feeling a bit under the weather and I asked him on several occasions if he wanted me to call out a doctor. He declined...and we carried on with our weekend as normal. Anyway...on Monday, the manager of my husband's carers decided (and against my husbands wishes) to get the doctor to call and see him. My husband was very angry at this....but he's since been told that he has no right to refuse the carers to call out a doctor! We understand that if my husbands condition deteriorated and he was unable to express his wishes that the carers could make the decission over him....but if he's conscious...talking...responsive...compus mentus...that he has the right to have his wishes carried out! He states that the carers are his hands and legs...and not his mind and brain!! I totally agree with him. HELP PLEASE...what can we do to make sure my husband is listend to? He's physically disabled...but ok in the head!!!!!!

Edited by Tyni, 10 October 2009 - 06:44 PM.

[Tinbasher]

Do you live in the UK? If so he does have certain rights to have his wishes carried out. Tin

[edlee]

Can you imagine the lawsuit if they didn't call the doctor,,,, and he died? And you wonder why they did so????

If you want his wishes adhered to,,, put it in writing. His carers are just that,,, they care. Take them off the hook financially. Then make your,,, or rather, his wishes known.

We all understand how much having our wishes overruled by others hurts,,, even when those others do it out of concern. But we all have to understand the limitations and responsabilities of those others.
ed

[gordonr]

quite right Ed

[Tyni]

Tinbasher, on Oct 10 2009, 08:16 PM, said:

Do you live in the UK? If so he does have certain rights to have his wishes carried out. Tin

It's not my wishes but my husbands wishes! Anyway....he feels that whatever control he does have left of his life...that the authorities are taking that away from him too! Common sense prevails...IF he is unable to consent as he is not conscious..then I uderstand that the carers can phone the doctor...but if he's responding...conscious....compus mentus...then shouldn't the final word be his???? After all it is HIS body!

Makes me think that his living will isn't worth the paper it's written on!! Lawsuit?? No chance...he didn't sue when he got injured...so if that's what we have to do...sign a weaver or something...then so be it.....but doesn't the Human Rights Act come into this at all?

Carers care...I agree...but they're there to be my husbands arms and legs...not his brain!

Tinbasher, on Oct 10 2009, 08:16 PM, said:

Do you live in the UK? If so he does have certain rights to have his wishes carried out. Tin

Yes we live in the UK.

[Lucydog]

Personally I think its better to be safe than sorry. Heres a scenario, a guy living down the road from me was a c4 complete. Last year he kept complaining he had a headache but thought it was nothing so ignored it. He died a couple of days later from a brain heamorrhage.
My mother had ovarian cancer but it was caught in time becasue I forced her to see her GP against her wishes, she thought it was nothing.
Im sure we all need nagging sometimes to see a GP for right or wrong. I would much rather our PAs called a doctor for nothing than ignore it.
But thats just my opinion.

[catmint]

Hi

I have to say that I agree with Lucy, if the carers are in any doubt them I think they should call the doctor.

My husband's carers are the complete oposite. they don't seem to understand that things that can be overlooked in an AB person have to be taken seriously in a quad. A chest cold can quickly turn into a chest infection and pneumonia within hours ( been there).

So while I understand where you're coming from I think maybe in the long run it's better they get expert advice when their not sure.

L

[wheeliebear75]

Double edged sword here; as was pointed out our health can deteriorate very quickly and so with anyone still being vent reliant I can see the concern, however I also see your guys' point that he should have the right to choose.

In the U.S. we do have rules & laws about what rights people have in regards to NOT having staff/PCA's take over things that the person does not want help with/done for them.

My Mom does OT/PT & PCA work with someone who is a quad not from SCI but from CP & they have to keep matriculate notes on everything! Now in the case of her client they're trying to get her to make decisions but the same ideology that has them trying to "normalize" her should be in place in either country here in the U.S. or UK. IF one of the workers did something the client didn't like she would take it up with my Mother who is the supervisor, if it wasn't resolved or if it was with my Mom then she would be able to talk to my Mom's supervisor. The managed care this woman receives is through a company; each company has slightly different rules & such; BUT there should always be some sort of chain of command that you can turn to.

I think at least for myself anyway it is important to know; was this the only time they've taken the decision making out of his/your hands? If they did this ONLY this time & due to medical/health issues then that is different than if it were a constant issue of not allowing him to decide for himself.

I have had help from "workers" who just do PCA as a way of earning an income, friends & family. Many times paid workers are hit or miss.....some are quite nice & do a wonderful job & do not try taking advantage of the people they're caring for in any way, while others see the job as a "golden opportunity" to take advantage of in various ways. Had my sister doing it for a bit.......not a good outcome......we love each other and all but that's entirely too much time for us to spend together. My Mom was great......just too much MOM , too hard to not Mommy me whereas she can 86 the "mommy in her". So for me having a friend or BF is what I prefer.

Where you find your help is up to you in many cases. If you find that you dislike the over-all care than you can change until you find something/somewhere that works best for the 2 of you.

[zena]

Tyni, on 11 October 2009 - 12:59 PM, said:

Tinbasher, on Oct 10 2009, 08:16 PM, said:

Do you live in the UK? If so he does have certain rights to have his wishes carried out. Tin

It's not my wishes but my husbands wishes! Anyway....he feels that whatever control he does have left of his life...that the authorities are taking that away from him too! Common sense prevails...IF he is unable to consent as he is not conscious..then I uderstand that the carers can phone the doctor...but if he's responding...conscious....compus mentus...then shouldn't the final word be his???? After all it is HIS body!

Makes me think that his living will isn't worth the paper it's written on!! Lawsuit?? No chance...he didn't sue when he got injured...so if that's what we have to do...sign a weaver or something...then so be it.....but doesn't the Human Rights Act come into this at all?

Carers care...I agree...but they're there to be my husbands arms and legs...not his brain!

Tinbasher, on Oct 10 2009, 08:16 PM, said:

Do you live in the UK? If so he does have certain rights to have his wishes carried out. Tin

Yes we live in the UK.

Hi I agree with you Tyni I looked after a man with MND and his brain was his only freedom I wouldn't have over-ruled his decision if he didn't want a doctor i would have written it in his notes that i had offerred to call the doctor but client declined.

[sh1wn]

I think your husband is in the right, I have had a few problems with some nurses and this, I might have broken it but it's still my body and if I tell you to stop touching me you damn well better stop touching me. Nothing makes me feel more helpless and disrespected then this. These people work for us and if they don't want to listen to the boss fire em. Not sure if your in the states but if you are, here is a link to a handout that explains his rights http://www.jointcomm...akup_Rights.pdf
Remember its his body and his choice!
Shawn

[dangerousdave]

Dont know about you but when i get ill i get a temp
When my temp rises for some reason - i cant reason - reasonable thought process just goes - its gone
I have enough trouble getting into my wheelchair
So calling out a doctor is a life threatening situation for me

[zena]

I guess there are two sides to this and I would say both are right.
But too many carers (not all) think they know better than the person they are caring for and too often aren't interested in the individuals rights or that a person who needs care has still got a brain that functions - very often better than everybody around them because all the time one spends waiting for assistance one is often using one's brain to think things through. I'm saying this from my experience of working as a carer with too many other carers who were more interested in facebook on their mobiles than their clients decisions.
I am not saying it in the context that i have now found myself in as a mum of a 19 year old son who has been a t2/t3 complete for just 16 weeks I have not got enough experience in life after sci to comment on that side of things. My caring experience is mostly with motor neurone disease and adults with autism.