Panic Stations..... really NOT happy !!

[DaisyG]

It's Daisy here, back with her problems again.


To update my recent isues....
Husband has moved RAPIDLY (after 3 weeks + on a ventilator) from ICU .... to HDU ..... to the main ward.

It seems that they could not get rid of him quick enough!!



Here's where the REAL problems start.

The ward have issued a SECTION 2 to the Social Worker, and 'say' he is ready to come home !!


Right now he cannot walk... he's doubly incontinent (having removed his catheter) .... and is SERIOUSLY confused + + +.


He thinks he's sat in the departure lounge at Heathrow !!
He's rambling away.. going from one subjuct to another ... to another....


TO TOP IT ALL OFF...... HE'S THINKS I'VE KILLED THE DOG !!

We've never had a dog!!!

It's OK to laugh out loud at thiis point if you so wish



On a 'good note' (if you can call it that...)... at least the staff and doctors on the Neuro Ward can hear what he is like... and hopefully take notes...


In between the rambling... he is sort of OK.
Would youu like a coffee..? ...... yeah... go on then....
He's shaking like crazy when he hold a cup/beaker....
Hot fluids are a definite danger ... and this needs watching.



I've TOLD the ward (after speaking to the CPN and husband's Social Worker) that I am not prepared to have him back home unless we have a NEW care package in place.


I've also asked for several things to be assessed BEFORE he is expected to come home.


I WANT a home visit/ assessment by the physios / OT's.... etc..

I don't know if I can manage / handle him on my own.

I will MOST probably need a hoist .....
but no advice on how to get hold of one....



It makes me SO ANGRY that the hospital are prepared to send him home in the condition he is in.


He has had a very quick physio assessment.... where he walked a few steps with 2 physio's, one on either side....
SO IT IS possible that he can walk again ... (Not forgetting his previous strokes / defecits on his left side).....


They just expect me to keep handling all that is thrown at her.....


I was most polite in requesting my / his needs BEFORE he is going to come home.


I want to see the incontinence nurse and have thiings in place too.
They were prepared to send him home like this... with NO advice etc..
just leaving everything up to me.
No incontinence products... etc....


Needless to say the staff are more than a bit miffed at me... so be it.
I REEAAALLLYYY don't like upsetting or annoying people...


I'm tired of fighting for my rights as a carer and a citizen / wife etc....


Anyway, I'm not giving up yet.



Social Worker says put in a complaint to the PALS people....
But I'm going to wait till he's at home BEFORE I do that.


CPN says that my husband SHOULD NOT really be coming home to me in the first place, and is enquiring about 'intermediate care'..... looking towards long term care...
They say that it is more than likely that I won't be able to handle him physically on my own anyway.... with me being to petite etc.....


Thanks for letting me go on .....

Take Care

DaisyG

 

[Gill W]

Daisy,

You sure seem to have one hell of a problem here. My heart goes out to you.

I don't know what to say that will help any, except to say stand your ground, there is no way that you should have to accept the word of the hospital that hubby is fit to go home, when you obviously have far too much to contend with.

I'm rooting for you and hope you get things sorted.

Hugs in the meantime

Gill
xx

 

[Skye]

Oh dear, Daisy, I just can't understand how they can send your husband home with no care plan in place. You can't possibly be expected to cope.

I would strongly recommend contacting PALS immediately. They really need get some support organised for you, and they couldn't do anything after he's home.

Other suggestions (which you've possibly already tried):-

Princess Royal Trust for Carers -- our branch has someone available to help with just this sort of situation.

User and Carer Involvement -- also excellent at sorting out problems, but I'm not sure how widespread they are.

Advocacy Service -- again, not sure how widespread.

I'm not surprised you're complaining. What I can't understand is how this can happen when the CPN agrees that you can't cope.

Good luck,

Love,

 

[Canadian Joanne]

Daisy,
I can only offer my sympathy. But hang on to that CPN, she's the only one who seems to be making sense at this point. It does sound like he's starting to require more care than you are able to give.

This is a very hard issue, especially for the spouses. I think it's even more difficult for wives, because usually they are not up to the physical challenges involved in AD. But if your husband can only walk with 2 people helping him, how on earth does the hospital expect you to manage on your own?

I'm not sure what PALS is but you might as well get your complaint in now, particularly if the social worker is advising you to. It will also have the bonus effect of keeping the SW sweet & on your side. We need all the friends & help we can get.

Take care
Joanne

 

[Cate]

Hi Daisy

Just wanted to send a ‘thinking of you’

Personally I’m a great believer in the power of the pen. Might it be an idea, so there is no confusion whatsoever, to write to the hospital stating very clearly what you expect in place before you even contemplate having hubby home, maybe your CPN and your husbands Social Worker would also be in agreement to write supporting letters also.

I can understand that ‘they’ want the bed back, well fine, but shifting an impossible situation onto you clearly isn’t the answer, putting you and your hubby at risk.

Finally, I totally appreciate none of us want to face the dreaded NH move, but for both your sakes, is this a consideration now!!

Keep strong.

Love

Cate

 

[DaisyG]

Thank you ...


Just to add...
Social Worker is a bit of a 'wuss' ? sp.

She's avoiding replying/ resoponding to the Hospital's Calls....
She does not like confrontation (who does?)...


She says that by doing this is giving her time to 'plan'.....
In the mean time she is trying to re-arrange the care package that we did have to a more current one.


The thing is...
I don't / won't know EXACTLY what I do need until he comes home.


That is the reason WHY I'VE INSISTED on a home visit BEFORE I agree to have him home.
If I cannot physically handle him on my own then I have no choice.


I'm not being weak and weary...
I'm only just over 100lbs, (7-7.5 stone).... have been this all my teen and adult life .... and just over 5'.

Handling would always be a bit of an issue ... even with a hoist it is going to be difficult. ... but possible.


I thought you had to have a lifting and handling assessment anyway...?


I have got a few people on 'the case' ... CPN etc...
I've been told that unless I kick up a fuss then once a Section 2 is issued then the hospital can release him.
IT'S UP TO ME TO MAKE A FUSS ETC... NOT THE CPN AND SOCIAL WORKERS !!



I've kicked up a fuss alright... in the nicest possible way I know how.


I've been very FIRM and EXACT in what I have said... so much so that one of the nurses I was talking to said....
"Are you a Doctor by any chance?"...

I took that as a huge compliment !!



Why on earth do we have to keep fighting ? ... it's crazy


If it were any of the nurses loved one / relatives the 'boot would be on the other foot'... as the saying goes.


I'm hoping that in time ( ??? a long way off ??? )... my husband will be able to walk again... on his own ..... with stick.
Not having him mobile in any way has given me issues that I never though of.


As for the incontinence thing....

The increased memory loss has been amusing .... in some ways....
The stories he is coming out with are amazing....


I'll be back later in the day...
Off to the Hospital again for the afternoon.

Take Care,

DaisyG

 

[Margarita]

I've been very FIRM and EXACT in what I have said... so much so that one of the nurses I was talking to said....
"Are you a Doctor by any chance?"...

I took that as a huge compliment !!

Good for you , power of postive thinking, don't let them Grind you down they good at that xx

Do it your way , sounds like you have a good CPN

 

[Kathleen]

Poor you, how on earth can one person be expected to cope alone at home for large parts of the day, when it takes 4 people to get your poor husband on his feet!

What really annoys me is that the very people who are telling you to take him home are the ones that are not allowed to carry out any procedure with a patient without at least one other person helping..........and all the equipment they can lay their hands on.

I admire you for sticking to your guns on this one, if you struggle at home, you could both end up in hospital..........2 beds "blocked."

Thinking of you.

Kathleen
x

 

[jenniferpa]

You go Daisy! Absolutely stick to your guns about this: there is no way you can move your husband on your own.

Jennifer

 

[Grannie G]

Absolute admiration Daisy.

You stand your ground. I know you shouldn`t need to, but `a girl`s got to do what a girl`s got to do`.

 

[BeckyJan]

I agree with so many of the previous comments. It is easy for us to talk but you need the energy to cope with all this. I have to say just keep pushing, also I think 'pen and paper' for record purposes is very important (you may need the copies in the future). Isn't it sad we have to think like this.

I am inclined to think you need an MP on your side too - and some publicity would help.

I really sympathise with you - the practical issues are bad enough, so you could well do without all this fighting and emotional stuff. You have so much support here - we are all rooting for you. Keep up the good (no brilliant and wonderful) work.
Beckyjan

 

[CassElle]

Panic Stations

Hi DaisyG,

Just a quick reply to your post. When my Mum was in hospital last year and was ready to be discharged, because she had sufficiently physically recovered, there still remained issues relating to mobility, incontinence and others as mentioned in your posting. She was transferred to a Rehabilitation Hospital to enable an assessment to be done and be mobilised to the standard at which she was at prior to her hospitalisation. I found this a blessing, as there was no way I would have been able to cope at the level of recovery she was at when they wanted to discharge her.

I too needed a hoist and obtained one through the Occupational Therapist at the Rehabilitation Hospital. Good luck.

 

[DickG]

Hi Daisy

There is not much I can add to what has already been said except to add my concern for your situation. I was tempted to say sympathy but I am sick of sympathy, what we need is help!

It is my opinion that you should not have your husband back home until all the issues have been resolved to your satisfaction. Your strongest card is that by being obdurate the NHS/SS have to foot the bill and that will provide them with the incentive to resolve the problems, please do not weaken when you hold the whip hand for they will try emotional blackmail.

Hugs

Dick

 

[chip]

Daisy i feel for you. I am also not happy with NHS. They don't think of us carers and what state they are sending our carees back like to us like. I handled my husband no problem but now im not sure i can and thats in 3days of NHS care. They forget there is a lot more in a ward to assist but at home there is only one on there own. Could the hospital staff cope if there was only one looking after him. Ask them.

 

[DaisyG]

Thank you all.....

Well, he's not quite as confused today..... or, it could be that I'm getting used to the incredible stories he is telling me


Had a good chat with the ward SISTER and told her what I expect to be done,
regarding assesments etc.
I'm going in tomorrow to chat with the Doctor on her ward round.
I want answers.


Also managed by chance to speak to the incontinence nurse.
She had already seen my husband earlier, but he had forgotten already.

Each time he p's himself he is surprisingly a little happy with himself .... as he 'thinks' it's the FIRST time that this had happened , and that he is gaining his bladder control again fairly quickly !!
The nurse asked how things were going... and he said FINE....


I told her the truth, and said that husband was inclined NOT to tell the truth, even if he did remember.



REALLY MIFFED AT THE NURSES.....
They are not filling in his incontinence chart correctly..... as they do not understand it ...
I can.... so why they don't is beyond me.
They need an acurate input ... output ... of all fluids....


The incontinence nurse and I 'just looked at on another in amazement', at the very idea....
She has had to do A MORE SIMPLE version for them to understand.


They also have been lying about the amount of drink that they say he is drinking.
Regardless of him drinking it or not, they are writing it down on the chart as though he HAS been drinking drinks he has been given.
NOT happy about that, and told them so.


BUT the current chart is a COMPLETE mess and is not worth doing.

New 'more simple' chart for the nurses to understand is going to start tomorrow.



Still insisting on that HOME ASSESSMENT.
Don't care if i keep on repeating myself to the staff...

THEY WILL TAKE NOTE OF ME.


Yes, ideally we could do with a proper rehab place BEFORE he comes home.
i think it depends on budget, and which Council you fall under.

CPN is looking at alternatives.


I don't know where 'my energy to battle on' comes from.
I know I have a whole lot of love in my little heart, so I guess that must be the reason.


Take Care,

DaisyG

 

[sue38]

I don't know where 'my energy to battle on' comes from.
I know I have a whole lot of love in my little heart, so I guess that must be the reason.

Daisy,

I have been reading your posts and I am full of admiration for you battling the 'powers that be' on your own.

I am sure that your love gives you the energy to keep battling - combined with the fact that you know what is best for him.

You sound like a real 'pocket rocket' You go girl!

Sue

 

[alfjess]

Hi Daisey

I admire your fighting spirit.

I don't think the hospital, or social work can send your husband home, if you refuse to care for him. Very hard to do I will admit, but maybe, just the push the professionals need, to obtain the help you require

I am also 5 foot nothing and approx 7 stone. What is the saying? Good things come in little packages?

Take care of yourself
Alfjess

 

[Tender Face]

................. is a bit of a 'wuss' ? sp.

That's the spirit Daisy!!!!! (In my neck of the North West we spell it that way too!!! )

I know this is still a very serious situation for you in all manner of ways .... but so thrilled you have posted with such fighting spirit ... for your hubby, of course, and especially for yourself too ....

Well done! Keep going for what you BOTH deserve ......

Much love, Karen, x

 

[jenniferpa]

Don't forget Daisy - it costs them about £450 a day to keep someone in a hospital bed. If you refuse to take him home, they have a powerful incentive to apply pressure where it's needed to get you the help you need and deserve.

Jennifer

 

[soulsmilin]

wish life was easier for you and as nurse, sorry that you feel this way, stick to your guns though, they can only put on you what you allow