PWD and complex medical issues - how to cope

[maryjoan]

My OH, with vascular dementia and brain atrophy, has complex medical issues around Crohn's disease and his stoma. He had a colectomy in 2017.

The frontal lobe atrophy which gives him anasogosnia - meaning he does not recognise that he has anything whatsoever wrong with him including the dementia.

He finds it impossible to realise when something is wrong and I get a garbled version. This has happened so many times, that I am scared of the responsibility of it all.

He mentioned something last week that told me all was not well - and the stoma nurse is coming out tomorrow - then this afternoon, he has given me a completely different scenario which confounds me.

Not a nice subject, I know - but I really need to put this past you guys...

To those not in the know a stoma is formed when someone has had bowel surgery and it allows faeces to pass into a bag attached to the outside of the abdomen. This bag can be emptied during the day, and changed as required.

My OH is able to empty it ( at the mo) but not change it - carers do this.

Now he is telling me about passing blood - and other than examining what is coming out of him every time, I cannot assess how the situation is - then he throws a curved ball by telling me the blood is coming from his rear end as well.......what am I to think?

I know the answer is to wait until the stoma nurse comes tomorrow, and that is what I will do, but I feel the responsibility of it all on top of the dementia is very daunting. On Boxing Day night last, when all the docs were closed etc, he told me he was going to the toilet a lot - I took it at face value, then thought about it again, and asked him was he actually having a wee - and he said 'no' and could not remember when he last had!!!!! Curved ball again. That caused untold trouble between Boxing Day and New Year!!!


Sorry, long drawn out and not very pleasant rant - my apologies.

 

[Amethyst59]

It would be unusual, to say the least if he was bleeding from the anus after a colectomy. Have you seen any stains on his underwear? The only other thing you can do, is be brave and look at the contents of the bag...don’t empty it!!! Just look. When my husband had his first surgery, a urostomy he said to me, learn how to do this because you will have to help me one day. I was sure I could never do it as I’m so squeamish and I refused to even look at it. Of course, as the years went on and he became more ill and eventually had a colostomy as well, I did indeed have to deal with it.
During the last weeks of his life he was admitted to hospital but there were no nurses ‘trained in stoma care’ and so I stayed with him day and night for over a week, wearing theatre scrubs, as I’d had no time to pack and ‘sleeping’ in a broken arm chair, by his bed. Sorry, too much information. It was a horrible time.
Anyhoo...if a coward like me can do stoma care...almost anyone can.
And I bet none of this ramble is helpful! Can you ring the stoma nurse and ask for advice?

 

[mab]

What a time you're having of it @maryjoan. Of course there's no 'one size fits all' in the medical world, but from close experience I do know that sometimes blood vessels on the stoma part of the bowel can rupture (think haemorrhoids!) and, consequently, blood passed into the bag. Naturally this is very alarming for the carer. The stoma nurse will be able to assess if this is the case.
Do hope all will be well.

 

[karaokePete]

Hello Maryjoan. I don't know if this helps but my wife is at the stage with her language skills that she sounds like she is talking sensibly but I now know that virtually nothing that she says can be taken at face value. My wife will also appear to exaggerate/embellish problems with her general health.
I cope by doing the best I can and minimising beating myself up(as much as I can) if I get things wrong because of the curve balls that have been thrown.

 

[maryjoan]

Many thanks one and all - the other thing also, is that he is on warfarin - so any bleeding is a bit of a concern.... I will see what the nurse says tomorrow

thanks again my friends.

 

[love.dad.but..]

Hello Maryjoan. I don't know if this helps but my wife is at the stage with her language skills that she sounds like she is talking sensibly but I now know that virtually nothing that she says can be taken at face value. My wife will also appear to exaggerate/embellish problems with her general health.
I cope by doing the best I can and minimising beating myself up(as much as I can) if I get things wrong because of the curve balls that have been thrown.

Without knowing your OH capability of understanding... also my dad used to pick the wrong word to describe so maybe he has a sensation of something from his bottom but that isn't actually blood although that is the nearest word he can find. Very hot so maybe sweat trickling instead. Has he the awareness to describe and to see blood in his stoma bag? Just a thought. But the nurse will be able to investigate

 

[karaokePete]

Hi @maryjoan, I hope it went well with the nurse today.

 

[maryjoan]

Hi @maryjoan, I hope it went well with the nurse today.

Hi Pete, thanks for thinking about me !

It is quite funny really - OH woke me a 4.30 am panicking quite frantically because he was convinced something was very wrong with the output from his stoma..........

Nurse came - diagnosis made - panic over - blame the beet root OH had been eating !!

I had to err on the side of caution as he is on warfarin - but relaxed now.

thanks a lot

 

[love.dad.but..]

Hi Pete, thanks for thinking about me !

It is quite funny really - OH woke me a 4.30 am panicking quite frantically because he was convinced something was very wrong with the output from his stoma..........

Nurse came - diagnosis made - panic over - blame the beet root OH had been eating !!

I had to err on the side of caution as he is on warfarin - but relaxed now.

thanks a lot

Ah..the beetroot effect! I had to do a double take for me one time. Glad all sorted