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Original poster

So confused by the Doctors & what they say

30 replies

Norton · 18/07/2009 22:02

I have name changed - please don't out me (especially as this is my second go at this thread as I failed to name change successfully)

DH is quite poorly in between reasonably long patches of wellness

He was hospitalised recently & the doctors said that he could live for decades with what he has or he might die during the next infection he gets

I am so confused by this, I don't know what to say to people; they keep saying 'He's out of hospital now, everything will be all right'

I don't know what to do or say - as anyone's husband could get knocked over by a bus tomorrow

It feels like a death sentence but it might never happen

OP posts:
Doodle2u · 18/07/2009 22:06

I don't have any advice or experience but I can only guess this must be like living with a live grenade.

How does your DH deal with it himself?

whomovedmychocolate · 18/07/2009 22:11

Hi Norton

I think you have to be honest with people - you say 'we were lucky this time' .

What practically can you do? Have you talked about what he wants to happen if he dies - sorted out the legal side (wills, money etc.). You should plan for the worst and hope for the best.

Many people who are quite seriously ill do go on for years, but it goes without saying that for those round them - as well as for the people themselves - this is incredibly stressful.

Without knowing exactly what's wrong with him it's difficult to specifically help but perhaps there is a support group for people in your position?

Good luck.

wrinklytum · 18/07/2009 22:22

Norton.

I have a dp who has a chronic illness and iss immunosupressed.I also work in an area where people have cancer and are undergoing high dose treatment.

I think that a lot of people with a chronic/ongoing illness can be maintained on a "plateau" and kept going for years if their treatment is maintained and if any infections and so on are quickly picked up upon and dealt with.Obviously if somebody who is at risk develops an infection they need immediate treatment or else their condition can easily become "Life threatening" if they do not have prompt treatment.So as a rule of thumb,if for instance dp temperature goes above 38 or he is in uncontrollable pain or he has d and v or he is unwell I seek help.Likewise should someone I nurse become acutely ill I would advise them to seek help quickly.Sadly there is no certainty onlifespan for anyone with such a condition but surveillance and monitoring is the key and prompt action to any deterioration is essential.Hope this makes sense !

Original poster
Norton · 18/07/2009 22:30

DH did his usual 'smile & nod & agree with everything said, then go away promptly forget and never remember again'

Which makes things very hard - we are discussing it, despite this memory loss/selective hearing

I guess updating our wills would be a good idea, & trying to take out extra life insurance is a no-no

I agree about prompt action - everyone keeps saying "aren't you worried about swine flu" - I can hardly say well actually no, a bad cold would be enough

I guess it is Saturday night & I am full of self pity and loneliness and a bit weepy

OP posts:
wrinklytum · 18/07/2009 22:33

have re read your thread and see what you are saying.I ususally say "Yes,AT THE MOMENT he is progressing well".

The uncertainty is a nightmare.I agree.I find taking it on a day to day basis is my only coping mechanism.If I think about the future (possible) too much 9I just get down.

Hope your dh is in a "Good" phase right now.

wrinklytum · 18/07/2009 22:36

Oh god yes,the smile nod and ignore thing here too!He is on so many meds he can't really take it all in.Have you managed to make amn appt with his consultant/I am hoping dp will allow me to sit in on his next cons appt where I will try to get an insight onto his long term prognosis if he doesn't mind me asking her!

Original poster
Norton · 18/07/2009 22:45

Fortunately for his ordinary appointments they let me sit in - the doctor prefers it as I have better/more concise & accurate info than DH

While he was in Hospital it was a nightmare - I couldn't speak to anyone - we live quite far away. But I wrote a letter explaining that he wanted me to be involved in what was going on (& he signed it) & the consultant rang me & I explained he doesn't listen/understand/pay attention/remember so they are treating him as having a 'learning disability' & writing stuff down & only telling him one thing at a time - which is better

He has just had massive Antibiotics so he is in a good phase.

OP posts:
wrinklytum · 18/07/2009 22:56

Awww Norton.

Glad he is in a good phase.

Have you tried PALS for liason and advocacy?

(with hcp hat on)

Original poster
Norton · 18/07/2009 23:03

Oh yes - they were good

I phoned the ward & spoke to a lady with very unclear English - she got quite upset as she couldn't understand what I was asking & I was getting upset because she couldn't understand me.

I phoned PALS - got accused of being a racist I pointed out DH was West Indian {hmm]x2 they apologised & organised for the Sister to phone me

But I am so unhappy atm

DD is getting some support from the young carers group locally (hopefully soon) but I am supposed to cope

Work is a bit of a nightmare (he normally works with me but he isn't well enough for that yet)

OP posts:
wrinklytum · 18/07/2009 23:08

That is terrible re PALS.I would write complaint letter and cc head of nursing and chief exec.(I realise you may not have time for this,lol)

I wrote a long rambly pissed post recently about being fed u of being the one who does it all.Is hard.Can empathise,and I only work pt.

Could you get some ss involvement/I have sn dd so have had soe carer support put in place...but you could contact adult ss fior an assessment,esp if your oh has some LD you would maybe qualify as a priority.

wrinklytum · 18/07/2009 23:15

I was a bit about ss but they have come up trumps.Awaiting dp assessment and am currently getting 6 hours after I have done nights care for dd which is fab.

Original poster
Norton · 18/07/2009 23:27

I am being a bit careful as I work in Early Years......last time I got help for DD (when she was being bullied) I had to inform OFSTED that a child I was 'involved with' had been referred to SS

Goodness knows what would happen if I sought help

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wrinklytum · 18/07/2009 23:38

Well am HCP prof and had always been a bit sceptical about SS but have to say they have been nothing but supportive and very professional.

dd has support from physical dis. team and dp is being assessed by adult branch.I felt slightly stigmatised at the time but they have allocated care co-ordinator and put stuff in and generally very good.Never thought I would be in this position though!!!

Original poster
Norton · 18/07/2009 23:56

I guess

DH & his LD....it's a bit odd really the Dr has agreed that they will treat him as if he had a LD rather than he has one iyswim

Oh I don't know - we had to cancel our holiday too - as camping isn't ideal & I am very down about that

OP posts:
wrinklytum · 19/07/2009 00:02

.I thimk amongst many things not being able to plan for anything is difficult

If you don't mind me asking what do dh LD entail?Is he on the autistic spectrum/Also,are you aware of the mental cpacity act,this has led to a lot odf changes for people with LD...Another thing to cite in any letter to the PALS people...

Original poster
Norton · 19/07/2009 00:12

TBH - I only have my opinions to go on

I think he is mildly dyslexic/dispraxic - but kinda not either

He came to the UK in '63 at 11 so no diagnosis at school

He struggles with written work but manages, he is better with kinaesthetic learning (eg dancing/driving). He doesn't do well with memory (but that could be by choice), or with complex instructions or even with concepts or abstracts.

And if he believes something, you cannot change his mind - even if you offer proof

OP posts:
wrinklytum · 19/07/2009 00:18

Are the med/nursing staff supportive,then?

I think it is important foryou to make them aware,sure you have

The easiest way to get answers is to go straaight to top,ie arrange appt with consultant,but if you are unhappy with care approach sister/cn/matron.

Hope dh is feeling better x

BCNS · 19/07/2009 00:19

went though this with my sister ( and H looks like various test due next week are going to come back bloody awfuly tbh.. but hey.).. the only thing I can say is live each day as it comes.. and find the best in each day.
sod other people.. just tell them your living each day for the best.

< manly pat on the back>

Original poster
Norton · 19/07/2009 08:50

I wasn't very empathic last night. I am sorry you are all going through hard experiences with your loved ones.

Do you find you just want to dump work/boring stuff & just do fun stuff? I am struggling with this atm I guess I don't know how much fun stuff we will get to do.

OP posts:
Original poster
Norton · 19/07/2009 18:22

If we only have a short time together I want to spend it doing good stuff

If we still have a lifetime I need to concentrate on making our living & carrying on

It's confusing

OP posts:
lisad123 · 19/07/2009 22:06

oh sorry your going though this (I wont out you) I would def make sure you go him to appointments. I know I go to most of DH appointments as he doesnt remember most of what is said and last time i didnt go, the macmillian nurse requested i def attend next one.

Make best of the time you have, illness makes you think twice. Spend time doing stuff you love and time with kiddies.

Its horrible living everyday with a cloud over your head but you will find a way to cope. Use the nurses, extra help and get the number for consultants admin, they can ask doc to ring back if your at all worried. HTH

Original poster
Norton · 19/07/2009 23:38

Thanks - I feel so silly as he could will be around for years yet & then I get panicky

OP posts:
Original poster
Norton · 20/07/2009 23:33

Having a bit of a bad evening

Sure tomorrow will be better

OP posts:
Original poster
Norton · 21/07/2009 18:13

But it so so so wasn't any better at all

I think it was worse

OP posts:
sweetfall · 21/07/2009 21:13

I empathise. It's the Sword of Damocles. I am going through partially similar issues with own health. I think you just need time to process.

As for other people I'd agree with the advice given here