Response to White Flag waving

[Poshdog]

This is a thank you and it is ginormous. I will respond to all in between catching trains, taxis and waiting for what is literally hours on the telephone. The feeling of support and advice coming to me from all corners of the world is overwhelming. Your words have got me through one of the most difficult of times. I do not know what the future holds as the diagnosis now seems to be severe dehydration and possible endocarditis causing delirium. So no one is talking any longer about sending him home any minute now. I shall act on all suggestions offered to me and send huge appreciations to all who have offered love, hugs and support. If all the people in the world were like you lot what a place it could be...💖💖

[SheffieldJane]

I think your own positivity is getting you through this Poshdog! We will continue to be here for you though. 🌷

[Poshdog in reply to SheffieldJane]

Thank you so much, it's almost worth having PMR!

[123-go in reply to Poshdog]

😂😂😩🤣😩 ❤️

[PMRpro Ambassador]

Don't let them fool you by the improvement they achieve with a few bags of saline!!! Been there, done that ...

[Poshdog in reply to PMRpro]

Don't believe in Father Christmas either..

[PMRpro Ambassador in reply to Poshdog]

No, me neither ...

After 4 days in hospital to be "pepped up", OH had gained 2kg in weight, said the ward doctor proudly. That's just fluid replacement, I said. No, "Substanz"said she. Sorry luv - I did physiology at Uni, you don't create muscle and fat in 4 days. Cognitively he was no better. A few weeks later the palliative unit achieved a minor miracle - by going about it the right way. It could only postpone the inevitable but both he and I had several weeks of a better QOL, which was the idea ...

[Nextoneplease]

I had endocarditis a few years ago, it was pretty dramatic and I was in hospital for weeks on IV antibiotics. I literally couldn’t stand up. But….they got me through it and I’m here to tell the tale! All the best to you and your partner, it sounds as though they might be getting somewhere with his condition 😊

Hugs xx

[Poshdog in reply to Nextoneplease]

So glad you got through it and lived to tell the tale. Partner couldn't stand either, quite terrifying - but you beat it, gives me hope x

[Nextoneplease in reply to Poshdog]

No one had a clue what was wrong with me for a few days after I collapsed and was admitted to hospital - but once they’d established it was endocarditis, there was a very good treatment regime, quite lengthy but effective. All the best to you 😊xx

[PMRpro Ambassador in reply to Poshdog]

I don't think they realise how scary it is being asked to care for someone who can't stand even with a bit of support when you are neither trained nor young and fit.

[Constance13 in reply to PMRpro]

I think they realise it completely. It's just that they can't find a way of offering help. Funds!!

[PMRpro Ambassador in reply to Constance13]

I don't think they do - I had a nurse insisting OH was using his legs to push up to help. She was talking rubbish. I could see the inability to help more because of financial constraints although it was even more so "no staff", it was the "you are NOT listening" that was the worst. We (I and the girls) identified each stage of deterioration days before they did - they were taken by surprise. It surprised me, I was with him all day every day, and usually you don't notice a slow deterioration as much as someone who sees the patient every couple of days where that changes in the time are greater.

[Sophiestree in reply to PMRpro]

And that too. Or has he had any fluid today? Oh no, then put on a drip

Has he had any food today, oh no, put on another

Have you cleaned his teeth, oh no, here comes the nurse to do it now.

Arghhhh

[Sophiestree in reply to PMRpro]

I even had that when they told me to take my husband to a&e in the first place. It took two other people to help me just get him into the doctors. But I had to say they needed to ring an ambulance. If you don't fight your corner they just let it happen..

And it's exhausting.

Every day

[PMRpro Ambassador in reply to Sophiestree]

I wouldn't even have tried - but then, our ambo crews aren't as overwhelmed as in the UK. If he had fallen - I called them. Then I got the White Cross emergency alarm so I was at least paying for them to come and help. It was the same teams, from the same base, but the conscience was salved! And when we did have to call 112 for ME, the crew and the Emergency Doctor checked on him and the girls to and told them to shout for help anytime they felt they needed it.

And yes - perhaps the greatest relief is when you stop banging your head against that particular brick wall.

[Sophiestree in reply to PMRpro]

I'm guessing the White Cross emergency is an Italian thing? Sounds good

[PMRpro Ambassador in reply to Sophiestree]

It is the charity that helps run our ambo service - Weisses Kreuz

weisseskreuz.bz.it/de/home-...

Maybe google will offer to translate? But the pictures say a lot about the serices they offer.

They train volunteers, provide first aid cover at events and on the ski pistes and provide a mix of paid employees and volunteers to crew ambos. I suppose they are a bit like Red Cross but a much more local base although they head off all over the country in emergencies. South Tirol has a reputation for being a region of volunteers - same applies for our firies, some professional, many volunteers.

They also have a medical travel insurance that can include air repatriation if you need it and comes in 3 levels of very reasonably priced cover. The joy of their home alarm cover is that the responders are properly trained and often strapping young men (and women who appear within 20 mins, having picked up a key for access if needed!

[Sophiestree in reply to PMRpro]

how brilliant is thatwhy don't we have that, especially the home alarm cover. I would absolutely have that living on my own.

[PMRpro Ambassador in reply to Sophiestree]

I have toyed with the idea - the girls said put your phone in your pocket!!! I'm waiting to see how the finances pan out ...

[Sophiestree in reply to PMRpro]

It is something I think about, more so since diagnosis. But yes, finances can take a while to sort.

It all seems to take an age.

[Constance13 in reply to PMRpro]

Sounds like the "Johanniter" here. St. John's Ambulance in UK.

[PMRpro Ambassador in reply to Constance13]

i said something like that to my YAS paramedic - who was rather scathing about St J's in the UK!!!! She thinks WK are great though.

They have a "Wish wagon" - taking terminally ill patients for a "one last wish"- they, together with local crews through Germany, took someone back "home" not so long ago. Simpler have been a day at the sea or up a mountain.

[Constance13 in reply to PMRpro]

Not really very pleased with Johanniter here either, to be honest.

I have an emergency bracelet to wear when I am left alone at home. However, I've only used them twice (when OH couldn't pick me up from the floor and again when I collapsed and was alone). Both times ambulances came. I could have called them myself - and it wouldn't cost me €32 per month!🤨☹️

[PMRpro Ambassador in reply to Constance13]

Much the same here - but a call taker for 112 told me off one night, picking an elderly frail faller off the floor wasn't what 112 was for, he said. The Sanitaeter didn't agree but as a member of WK I didn't mind - and by doing it I knew if something happened when I was out they had a key to get in which was essential.

[Constance13 in reply to PMRpro]

Key! That's why I keep paying them.

[Sophiestree]

Stand your ground. Don't let them fob you off, you have so much to deal with already. It seems if you don't create, they just let things go hoping we don't notice.

[Poshdog in reply to Sophiestree]

They told me 'he fairly leapt into his wheelchair'. What the f**k are they talking about, he can't even sit unaided let alone stand! Excuse the f word but I have run out of vocabulary to describe it all.

[Sophiestree in reply to Poshdog]

Sometimes there is no other word 😬I really feel for you.

[Sharitone in reply to Poshdog]

Good for relieving the stress! My sister is a vicar and frequently whatsapps me in dodgy language to let off steam!Full of admiration for the way you are coping!

[PMRpro Ambassador in reply to Sharitone]

Sounds like my sort of vicar ...

[123-go in reply to PMRpro]

🤗

[Poshdog in reply to Sharitone]

My love to your sister! and to you for telling me!

[Sharitone in reply to Poshdog]

I did pass ob your message, and ths wa her reply: 'Aw! Perhaps s/he needs some STL therapy?

(S** the lot of them... )

[Poshdog in reply to Sharitone]

There is really no reply I can think of to do that one justice!! Made me laugh though! x

[PMRpro Ambassador in reply to Poshdog]

Sounds familiar ...

[Constance13 in reply to Poshdog]

You didn't use the word! 🤪

[Poshdog in reply to Constance13]

But I thought it very powerfully!!

[Koalajane]

This is showing what a strong person you are. Keep being strong and hopefully everything will improve. Know you are doing what is best for all

[Poshdog in reply to Koalajane]

Thank you, just a question if the brick wall goes before my head! x