Help ! Dad needs endoscopy he wont have it very ill so stressful

[deepetshopboy]

Hi all long post sorry just need advice
i recently posted about my dad being ill hes already got advanced dementia stage 6 but still active young 73 anyway in last 2/3 weeks has been very ill
Coughing for last 8 weeks took him drs 2 wks ago he gave steroids possible copd flare up dad hasnt had any copd in last 10 yrs been fine
also swallowing issues with tablets dr turned them into melt in water /melt in mouth then a week later
Suddenly declined in 2 days coughing like mad /plegm /vomiting slightly/not eating hard food /weeing all the time / and constantly loud belching hugging hes tummy all over the course of a weekend and this week within that time

I've called 2 ambulances/111 pestered the chemist / drs /took him for ultrasound at private clinic arranged and paid for by me last sunday ( absolute nightmare by the way dad kicked off refused the test eventually had it then was swearing n shouting on way out ?‍♀️
Called 1 st ambulance 2 wks ago came out was going bring him to hospital said could be bowel blockage but I wouldn’t be allowed in and dad was already agaited confused so they deceided to get 2 nd opion n call out of hours gp .out of hours gp came 3 hours later and dad lied down dr checked tummy said ok nothing wrong with him by this time dad had temporally stopped coughing n belching
Next day called dr had to wait 2 days to get bck to me in the meantime rung private clinc to arrange ultrasound to see of anything going on
Wensday last locum dr rung back said they were having meetings to find out how to proceed she rung me back said they would put my dad on 2 wk emergency appointment for possible cancer then I told her im still going ahead with private ultrasound anyway
Nobody offred x ray -blood tests so far ...
And she said she would refer him to salt team ( salt team they now dont want to know as said dad needs further investigation )
Next day drs receptionist rung said he booked a phone appointment i said no he needs face to face appointment hes very ill he then cancelled that said hospital will be in touch i wish now id kept my mouth shut ?
Amist all the confusion dad was rebooked for another phone consultant date /and reception didnt know what was happening
?over last took dad to ultrasound last sunday disaster managed to get test done just about he was throwing tantrums
Nxt day morning called 2 nd ambulance as dad was belcing so bad holding on to sofa very distressed horrible to watch was pulling my hair out in stress (I'm self medicating dad with peto bismol andrews liver salt and sillicol gel to try and help him )
Ambulance wouldn’t do anything cut a long story short checked hes ecg chest and bloid pressure spent more time ringing dr and out in the ambulance then actually with my dad kept patronising me saying ohh you got carer burnout did you do this did you ring the dr have you thought about care home etc i was getting annoyed bybit qll said the hospital wouldn’t do nothing only tests they just done said hold fire till appointment comes up very frustrating ?said he rung dr n dr said nothing they can do n will have another meeting about him this week but to just wait till hospital appointment comes up
All wk now going into 3 rd wk dads still ill
Had to chase up private ultrasound test for 3 days for results then email them myself to gp as private company useless disgrace .
In meantime results came bck ok bit of fatty liver dr spoke briefly said he needs x ray /stool test / blood test
This was private dr
Then appointment came through to hospital friday face to face to see consultant or so I thought..
Spoke to mental health nurse who offred to go to hospital with us
Yesterday got phone call from hospital which has thrown everything up in the air again im afraid i lost it apparently its for a endoscopy which could be perfomed same day n before that dads got to have a covid test 3 days before before
I couldn’t believe it
1 he will not have a covid test neither a endoscopy
If they try to perform either test he will go ballistic and likely hit out not going to happen
Tried calling the hospital but couldn’t get it told him he wont be having a procedure as he got advanced dementia he needs specialist help ie sedation or alternative tests so therfore there not point in him going for covid test as he will only be seeing consultant i said ye will not telorqte a camera shoved fown hes neck not a slab of meat
He kept saying when can he come in fir covid test grrrrrr
I was holding out some hope of dad getting help now seems hopeless spoke to nhs rebooking line to cancel it for hine appointment in the hope i can make some sense to the consultant and explain the situation but i cant cancel call centre staff said maybe best to get yhe endoscopy he needs it i told her u don’t understand he cannot have it !!! Gp receptionist said why dont i leave the test cancel altogether everyones got a opion on it now ?
Ive alreafy gpt a prebooked appointment with dr /psychiatrist via zoom monday booked a month ago before all this so ill have to see what dr comes up with
Can you help at all

 

[nitram]

I think you need to have a serious chat with the GP about the way forward.

It sounds as if a colonoscopy rather than a gastroscopy is being proposed, this will require bowel prep which he may not be able to tolerate unless it's only the very lower part of the bowel they want to examine in which case a phosphate enema might be sufficient.

A blockage could mean major surgery which will have other problems.

Has a CT scan or a barium x-ray been mentioned?

 

[Jessbow]

I dont think they will have him anywhere without a covid test.

Have you checked the contra indications of the meds you are giving with the prescribed ones? Liver salts & pepto Bismol, I'm not suprised he's belching. Its a diarrhoea treatment- 2 days maximum. Whilst Liver salts is a laxative!

And you say he isn't eating anyway.

Have you asked if he can be sedated for any procedure?

he sounds very difficult, I wonder just what would happen if they carted him off in an ambulance without you? He might be more compliant, he might not, you might have to let them try.

Are the Drs aware of this?

 

[Buckles]

It's hard to get a feel for everything that's happening - so sorry if it seems I'm missing something, as it sounds like a stressful time with lots of overlapping teams and opinions. I feel for you as it all sounds very frustrating.

From what you've said, it sounds like your dad has had a persistent cough, with deterioration (likely a chest infection) - potentially resulting from tiny bits of what he swallows (drinks/food/pills) maybe going down the wrong way into his lungs on a background of COPD. It sounds like he had some steroids but has he had any antibiotics?

From the gut side of things, it sounds like severe uncomfortable belching is the main issue (not sure if there was pain also(?)), this could be related to reflux and you've been trying over the counter remedies, but has he had omeprazole?

It doesn't necessarily sound like a scope would be within your dad's best interests, especially due to the stress of the investigation but that's obviously a call for you (?POA) and his doctor - and I know these forums have narrow info so sorry if that sounds wrong.

I would try getting an appointment with a doctor who knows him (GP or dementia specialist) and ask about antibiotics and reflux medicines. I think the SALT assessment should be happening regardless due to his progressed disease and the fact you've seen issues with choking with tablets, alongside a persistent new cough.

good luck

 

[Duggies-girl]

@deepetshopboy this all sounds absolutely awful for your dad and really stressful for you, I really don't know how you are coping with it. My dad had four endoscopies in total and he was sedated every time and had no memory of it afterwards. All I had to do was get him to the hospital early in the morning and he was not allowed breakfast so it was all quite simple but your dad sounds a lot more volatile than my dad and you know him better than anyone.

I don't know what to say to help you other than take it a step at a time. Try and get him for a covid test and if he won't have one then at least you have tried and failed which would put it back into the hands of the GP again and may prompt him to be a bit more helpful. If he does accept the covid test then you move on to the next step, hospital appointment and see what happens.

Whatever happens I don't think that you can go on like this and something is going to fail soon and your dad will likely end up in hospital and I know that you don't want that but if it does happen then perhaps they can find the cause of his problems. I know it is really difficult and I had a similar time with my dad and the worry and stress of months of weight loss, appointments and investigations was awful but I did at least have a very easy going dad, if he had been difficult I don't think I would have managed at all.

I hope things improve for you both.

 

[jennifer1967]

ive just linked choking and COPD. my husband chokes on the tiniest bit of pasta or a bread crumb, strand of rice if its dry. its not in his lungs but in his airway by his throat. there is so much phlegm with COPD and his airway is full. they have to blow their noses more because of all the mucus. he coughs and coughs so he cant get his breath so im patting his back for 1/2 hr sometimes until he coughs up what his choking on. ive just googled liver salts and be careful of the salt content for kidney disease and high blood pressure and for the sugar content with diabetics. there is a laxative affect but also bilious affect depending on how many spoonfuls you give him. i have had 2 endoscopies and they are frightening for me but i did have a sedative so i didnt know much about it and havent really remembered it. do you have to go to the hospital or wood it be easier to order a home test?

 

[deepetshopboy]

ive just linked choking and COPD. my husband chokes on the tiniest bit of pasta or a bread crumb, strand of rice if its dry. its not in his lungs but in his airway by his throat. there is so much phlegm with COPD and his airway is full. they have to blow their noses more because of all the mucus. he coughs and coughs so he cant get his breath so im patting his back for 1/2 hr sometimes until he coughs up what his choking on. ive just googled liver salts and be careful of the salt content for kidney disease and high blood pressure and for the sugar content with diabetics. there is a laxative affect but also bilious affect depending on how many spoonfuls you give him. i have had 2 endoscopies and they are frightening for me but i did have a sedative so i didnt know much about it and havent really remembered it. do you have to go to the hospital or wood it be easier to order a home test?

Ive asked about him having a test at home they are saying hes got to have the covid test for the procedure i said he cannot have a Endoscopie without a sedative at least and that in itself needs a separate appointment so therefore he doesn’t need a test if hes just seeing a consultant
I had blood tests at same hospital in mid covid crisis no covid test was required

 

[deepetshopboy]

ive just linked choking and COPD. my husband chokes on the tiniest bit of pasta or a bread crumb, strand of rice if its dry. its not in his lungs but in his airway by his throat. there is so much phlegm with COPD and his airway is full. they have to blow their noses more because of all the mucus. he coughs and coughs so he cant get his breath so im patting his back for 1/2 hr sometimes until he coughs up what his choking on. ive just googled liver salts and be careful of the salt content for kidney disease and high blood pressure and for the sugar content with diabetics. there is a laxative affect but also bilious affect depending on how many spoonfuls you give him. i have had 2 endoscopies and they are frightening for me but i did have a sedative so i didnt know much about it and havent really remembered it. do you have to go to the hospital or wood it be easier to order a home test?

Im just speecless by it all
Hes very aggressive if he doesn’t want it done and i saw the behaviour at the ultrasound he wont have it and certainly not without a sedative
Im going to talk to the dr on monday see if i can either get a letter explaining the situation or cancel it again for a phone appointment
Tbh i dont think anything’s will be done now
Im going ask about care homes on minday too much now even god or any human being couldn't cope with this what im going through
Its just so bad and awful as this all happened at once

 

[deepetshopboy]

I think you need to have a serious chat with the GP about the way forward.

It sounds as if a colonoscopy rather than a gastroscopy is being proposed, this will require bowel prep which he may not be able to tolerate unless it's only the very lower part of the bowel they want to examine in which case a phosphate enema might be sufficient.

A blockage could mean major surgery which will have other problems.

Has a CT scan or a barium x-ray been mentioned?

No nothing as ive not spoke to a dr since last wk wensday
Nobody has called me spoke to private dr who suggested i needed to get him blood tests / x ray

 

[deepetshopboy]

I dont think they will have him anywhere without a covid test.

Have you checked the contra indications of the meds you are giving with the prescribed ones? Liver salts & pepto Bismol, I'm not suprised he's belching. Its a diarrhoea treatment- 2 days maximum. Whilst Liver salts is a laxative!

And you say he isn't eating anyway.

Have you asked if he can be sedated for any procedure?

he sounds very difficult, I wonder just what would happen if they carted him off in an ambulance without you? He might be more compliant, he might not, you might have to let them try.

Are the Drs aware of this?

He was belcing before i gave him liver salts /pepto bismol /silicol gel thats the reason i gave them he was belcing 2 weeks non stop
No ambulance wanted to take him said wait till appointment nothing can be done before that
And he wont have the covid test i tried sticking the test stick gently up hes nose from chemist they said just to try the nose as they do on children he swiped it away ☹️

 

[deepetshopboy]

It's hard to get a feel for everything that's happening - so sorry if it seems I'm missing something, as it sounds like a stressful time with lots of overlapping teams and opinions. I feel for you as it all sounds very frustrating.

From what you've said, it sounds like your dad has had a persistent cough, with deterioration (likely a chest infection) - potentially resulting from tiny bits of what he swallows (drinks/food/pills) maybe going down the wrong way into his lungs on a background of COPD. It sounds like he had some steroids but has he had any antibiotics?

From the gut side of things, it sounds like severe uncomfortable belching is the main issue (not sure if there was pain also(?)), this could be related to reflux and you've been trying over the counter remedies, but has he had omeprazole?

It doesn't necessarily sound like a scope would be within your dad's best interests, especially due to the stress of the investigation but that's obviously a call for you (?POA) and his doctor - and I know these forums have narrow info so sorry if that sounds wrong.

I would try getting an appointment with a doctor who knows him (GP or dementia specialist) and ask about antibiotics and reflux medicines. I think the SALT assessment should be happening regardless due to his progressed disease and the fact you've seen issues with choking with tablets, alongside a persistent new cough.

good luck

Hi antibiotics yes hes finished a course
Hes already on omperzole for barrets ostifgois sorry cant spell it but a type of gullet pre cancerous thing hes had for 20 yrs
The ambulance checked for chest infection said chest clear but still could be copd flare up
Has not had x ray blood test nothing only the ultrasound i arranged and was banging hes chest and side when belching a few times like food stuck in hes gullet

 

[Jessbow]

He was belcing before i gave him liver salts /pepto bismol /silicol gel thats the reason i gave them he was belcing 2 weeks non stop
No ambulance wanted to take him said wait till appointment nothing can be done before that
And he wont have the covid test i tried sticking the test stick gently up hes nose from chemist they said just to try the nose as they do on children he swiped it away ☹️

So if they are not curing it, is it worth continuing? Peppermint cordial would prob do the same job and interfere less with his ordinary meds

 

[deepetshopboy]

Update i spoke to dr today the dr didn’t seem to know what to do apart from saying its so difficult with your dad I suggested he have a blood test and x ray which the dr has agreed with and said theres nonpoint in going for the 2 wk emergency appointment if they are not going to do anything he will try and speak to the hospital for a phone appointment
In the meantime hospital rung said the nurse had insisted on him having the covid test and endoscopy on Friday if he was coming i said forget it ive already spoke to dr he said cancel it
Not sure what planet the nurse is on if shes been told he cannot have a endoscopy/covid test why on earth is she insisted on him having it beggars belief
Then dr text with a link for blood test booking form its a 2 wk wait for blood test and no forms to bring in which i need to ascertain what blood tests he needs i feel like im having to remind and push medical people on all the time so ive now wrote a note asking dr if my dad could possibly have the blood test at home be quicker and less stressful, if not i need a blood test form to bring in and also would it be worth getting a barium swallow x ray rather then x ray
Then of course i have the problem of covid test n dad not wanting it all so difficult ?‍♀️
Meantime dads still coughing vomiting and belching moaning about it ☹️

 

[Jessbow]

How would you get him to drink the barium? Who ever has requested the blood tests will have stated what tests they need electronically. Ask when you get there for the tests what they are testing the blood for. What difference will it make to knowing beforehand?

 

[deepetshopboy]

How would you get him to drink the barium? Who ever has requested the blood tests will have stated what tests they need electronically. Ask when you get there for the tests what they are testing the blood for. What difference will it make to knowing beforehand?

It says on the booking form that a blood form is required i go for regular blood tests at the hospital
I dont know if he will drink the drink i can only try

 

[jennifer1967]

the blood test form will be in his notes on the computor so wont need them but just to take him. if community comes out, they can collect from the doctors or its been done electronicly my husband went to surgery yesterday and didnt need form and i didnt have form when community did my blood test at home. not sure about barium meal if he cant swallow and choking. its nasty and thick stuff. i know ive had it

 

[deepetshopboy]

It says on the booking form that a blood form is required i go for regular blood tests at the hospital
I dont know if he will drink the drink i can only try

Dr didn’t request the blood tests he sent me a link to book therefore i have to bring the form with me because of this hospital/covid they are only doing minimal tests so its a 2 wk wait for one

 

[nitram]

The blood test can be requested electronically, all the person has to do is turn up at the hospital appointment. The request will sit on the system until the hospital can schedule it in.
Before covid I had regular 6 monthly tests doing it that way, since covid I request the blood form to be posted to me and then book in at GP, I did one the this way yesterday and emailed hospital for result.

 

[Jessbow]

Has he had either of his covid vaccinations?

 

[deepetshopboy]

Has he had either of his covid vaccinations?

Yes both