Medical tests and appointments

katy66

Registered User
Jun 14, 2015
29
0
The Fens
Mum (who has VD) was diagnosed with very low red blood cell count, severe anaemia possibly due to an internal bleed. It was considered as an urgent case and she was referred to hospital for a series of exploratory tests.
The tests have not been going well.
The first one - a camera up the back end was fine
the 2nd one - an endoscopy - camera down the throat - didn't happen. She was prepped okay and the nurse was pretty good and explained the procedure 4 times showing diagrams etc. but when the consultant tried to insert the tube into Mum's throat - even though she had been given sedation - she refused.
The next set was for a virtual colonoscopy CT. The preparation for this was horrendous. Had to spend two days with strong laxatives and a very restricted diet. I was prepared - having bought disposable aprons, gloves and soak up pads. The night before we were due to start ( Friday)Mum wasn't very well - she claimed she was feeling very blumpy!
Had to resort to calling 999 in the end as was getting no where with GP. He was supposed to phone me back but after an hour still hadn't. It was Friday evening so I began to panic.
The paramedic who came was brilliant. He fully understood dementia and my concerns. He wasn't bothered that I may have wasted his time. Mum had a very high temperature and a viral infection was suspected. She was prescribed with a course of anti biotics.
The paramedic said not to go ahead with the prep for the CT as Mum wasn't strong enough.
On the Monday morning I phoned the hospital to cancel the CT scan and explained why. The nurse said that there were different tests that could be carried out that would be easier for someone with dementia to cope with. They hadn't been told that she had dementia - aren't GP's wonderful!! I should hear within a few days. After a week I phoned the hospital again to find out what was happening to be told that the consultant had decided that the alternative tests would not be suitable and he had referred the case back to the GP. Oh joy!!
This was over a week ago and I have not heard a word from the GP
Should I chase it?
I have been led to believe that it is likely that the internal bleed may be caused by a cancer and that this would probably not be treated anyway.
Should I put Mum through a series of tests that will not be easy for her if there won't be an end result?
It is very hard when you have to decide on behalf on someone else.
Mum is 79.
Our GP is adamant that Mum will understand if we just explain things clearly enough!!
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
Your GP is a complete dumpling. You take charge of the decision making as he is obviously incapable and has no understanding of what you are dealing with.

Good wishes.
 

lesley1958

Registered User
Mar 24, 2015
107
0
Bristol
"Our GP is adamant that Mum will understand if we just explain things clearly enough!!"

Give me strength. So she might - but REMEMBER the explanation???? For more than 30 secs???? I think not.

How on earth can a GP not understand that explanations don't cut it with dementia?

Your poor mum and poor you. It has to be your decision but I would be inclined not to put her through these tests.

Wishing you both strength.
 

cragmaid

Registered User
Oct 18, 2010
7,936
0
North East England
What a load of utter twaddle you've been fed.....( that's the polite version:eek::rolleyes::rolleyes::rolleyes::rolleyes:)
I told my Mum "there's your dinner, eat your dinner, your dinner is getting cold. I'm putting your dinner in the bin" and she heard everything and wasted another dinner. When the PWD says they understand, it usually means they only heard the words.

If I had had to accompany Mum on the bowel investigation trail after she developed Dementia, I would have said no on her behalf, having seen what the rigmarole and physical effects caused her when she did have capacity. Both she and I said that should the Big C have moved there ( Mum had Malignant Melanoma) we would not have pushed for treatment anyway, and as long as she was not in pain, that's the way things stayed.
 

irismary

Registered User
Feb 7, 2015
497
0
West Midlands
Oh dear what a nightmare! Took my OH to see GP today and when listening to his chest and asked him to take deep breaths in and out and OH did not comply he said it louder. Well that helped! I thought GPs would be more aware.
 

PeggySmith

Registered User
Apr 16, 2012
1,687
0
BANES
Coincidence but had this conversation with NH manager this afternoon. We were both torn between laughter and despair.
 

Linbrusco

Registered User
Mar 4, 2013
1,694
0
Auckland...... New Zealand
In 2012 At the beginning stages of dementia, Mum was losing weight rapidly, complained of upset stomachs, had a lot of wind, and her bowel motions were irregular.
Mum was sent for a CT Colonography. Even that was a mission due to the bowel prep.
Then they found a few suspicious areas so wanted to do a colonoscopy.
Mum found the bowel prep, enemas and fasting horrendous.
Colonoscopy showed a few bowel polyps which they removed, but found a larger one which was of concern, so another colonoscopy was scheduled. :eek:
turned out it was cancerous, so she was scehduled for surgery.

Surgery was a success, caught in early stages so no further treatment necessary.
I do feel the GA hastened Mums dementia.
A year after Mum received a letter dor a follow up and another colonoscopy.
By this time Mum was diagnosed with Alzheimers. Her anxiety hit the roof over it.

I didn't feel Mum could cope at all with another colonoscopy let alone alone the bowel prep, or following any instructions written down as previous
As her POA I have made that decision.
I can only go by her eating, weight and bowel movements.
They do a yearly blood test for CEA marker ( carcinogen antigen)
Mum has full blood tests every 3 months as she has had chronic lymphocytic leukemia for 5 yrs.
Another thing that we will need to cross if her symptoms become worse.
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Katy, what a difficult position to be in, and I am sorry to hear about your situation.

I think it can be very challenging to make these sorts of decisions and I'm so sorry you don't have better support from the GP. If you do find an understanding specialist/consultant of any type, I'd ask for a private chat and see what advice they can give you. If not advice, they might be able to give you additional information that would help you make a decision.

I know with my mother (73, Alzheimer's and no short term memory), I would be very wary of anything that involves a trip to the hospital, as pre-diagnosis my mother had a series of medical issues that really ground her down and she gets very upset by even the thought of having to go for a test or procedure or even doctor's appointment. Of course you have to make the best possible decision for your mother, and that's not necessarily easy to do.

Best wishes to you.
 

Lawson58

Registered User
Aug 1, 2014
4,333
0
Victoria, Australia
OH had an internal bleed about 18 months ago and was admitted to hospital through the emergency room.

His AD was in the early stages so he understood fairly well what was happening. They kept him in hospital and so they did all the preparation for both a colonoscopy and an endoscopy and neither test showed the cause of the bleed.

There was a further test they could have done which required OH to swallow a tiny camera which would check the bit that the colonoscopy and the endoscopy didn't cover.
They eventually decided not to do that because if they did find something, it would take extensive surgery to correct and they didn't think OH would survive that as he has a severe cardiac condition.

You didn't say how old your mum is and if there are other health issues besides the AD. To my mind, you need to weigh up the overall situation for your mum and decide what would be the gains for her as opposed to the distress it might cause her for you to forge ahead with the additional testing.

OH has not had another bleed and the doctors are quite happy in consultation with me to leave things alone, being aware that it was possible that he could have another bleed.

Accepting that there would be difficulty in dealing with cancer creates another problem, and I suspect that we would not walk down the road of continuing treatment with his overall poor general health as it is.

You have some tough decisions ahead and I wish you strength in whatever you decide.
 

Lancashirelady

Registered User
Oct 7, 2014
110
0
Common sense 0, targets 1

My Mum had a low blood count and the GP leapt to the assumption that she had an internal bleed and therefore bowel cancer. I pointed out to him that she had often been anaemic in the past and had improved with iron tablets but he didn't want to listen and set the wheels in motion - hospital appointment followed by a CT scan, rather than anything invasive, thank goodness. The CT department seemed to be full of elderly people having abdominal scans. And guess what - Mum did not have bowel cancer, she just needed some iron tablets, which would have saved us a lot of bother and the NHS a lot of money if they had just been prescribed in the first place. The target time for cancer diagnoisis seems to have overcome common sense.
 

arielsmelody

Registered User
Jul 16, 2015
515
0
It does sound like a tough decision. My OH has a long term stomach condition, so he's had an endoscopy and a few colonoscopies, and even for an otherwise healthy man with full capacity they have been hard work. He totally hated the endoscopy so I can see why your mum might have found the sensation too difficult to cope with. And he's been through the whole restricted diet, laxatives etc procedure before a colonoscopy, and again it's hard work, and on the day he's been very dehydrated because fluids are limited, which has made him feel pretty unwell just as a result of that.

To be honest, you are the person who knows your mum best and how she feels about medical issues and how her general health is, and now poorly she is at the moment. There isn't a right or wrong answer - all any of us can do is to try to do our best. I think I would go back to her gp (on my own) and try to get his balanced view on what might be wrong and how important or useful these tests would be.

Best wishes to you and your mum.
 

katy66

Registered User
Jun 14, 2015
29
0
The Fens
Thank you all so much for the replies.

Sensible, sound advice as always
I have decided to make an appointment at the GP's for an update.
I will ask the receptionist if any of their GP's are dementia aware?!

Mum seems fairly well in herself. Perhaps tires more quickly than she did but she is 79 and goes to her day centres 3 days a week.
I try to take her out and about on the other days so she is reasonably active

We had a trip to Dunelm yesterday for new bedding and towels, it was fun!
 

katy66

Registered User
Jun 14, 2015
29
0
The Fens
An update on this situation.
I did phone the GP's and expressed my concern that nothing seemed to be happening even though they had classed it as urgent. I also asked if there was a GP there who was even slightly dementia aware. I was told that the GP who was dealing with Mum was the dementia aware one! I couldn't stop myself from replying "gawd help us then"
anyway he did then phone me and told me that he had decided that as Mum is not able to comprehend the situation he has decided to go no further with tests. He has prescribed iron tablets and told me to let him know if she starts to experience pain which he will then control.
It is not easy to tell if she is in pain - I pick up on her acting differently and fidgeting more so guess that would have to be my pointer.
I could wave my POA at them and insist on tests being carried out but don't know whether I should.
If they will not treat cancer if it is diagnosed then surely there is no point in diagnosing it?
Why put her through the unpleasantness of tests?
It is very hard having to make choices on behalf of someone who can't as none of us know what the outcome will be.
We seem to end up racked with guilt which ever way we go.

Many thanks to all of you who listen and understand.
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Katy, thank you for the update.

It is very difficult to have the responsibility to make decisions for another person, someone whom we wish could make their own good choices. You are not the only one here who struggles with this. In fact, sometime in the last year, I read a book that was about how to make decisions for people who can't. I can chase up the title and author for you, if you wish.

I know I've also seen references to pain assessment tools that are used for patients with dementia and in other situations, where they cannot self-report. Again, perhaps I can find a link. Hang on....okay, I Googled "pain assessment scale for dementia patients" and here are some results:

https://www.healthcare.uiowa.edu/igec/tools/pain/PAINAD.pdf

http://www.geriatricpain.org/Content/Assessment/Impaired/Pages/default.aspx

http://www.apsoc.org.au/PDF/Publications/4_Abbey_Pain_Scale.pdf

In the end you have to be guided by what you think your mother would want, if she were cognizant of the situation; what is best for her, understanding that "best" is subjective; and also what will do the least harm. Not an easy task, and a lot of factors to balance. Best wishes to you.
 

Staff online

Forum statistics

Threads
138,115
Messages
1,993,113
Members
89,779
Latest member
peanutbrain