Colonoscopy + dementia. Panicking massively.

[JayGun]

Has anybody had to take their loved one with dementia for a colonoscopy?

The actual colonoscopy itself is not my worry, I am rather selfishly wondering how the prep is to be managed.

I can't get MIL to drink 75ml of liquid so how am I going to get her to drink 5000ml in the morning and 5000ml in the afternoon? (OR vice versa depending on the time of the appointment.)

As for not eating for 24 hours plus. It's going to be 24 hours plus of raging and crying and running round to the neighbours, and calling the police, and saying we're abusing her. And the house will have to be cleared of food otherwise I'll doze off sometime during it and she'll be feeding her face.

Her bedroom is upstairs and the loo is downstairs so she probably won't be able togo to bed and sleep, and if by some miracle she can, what if she falls down the stairs because of hunger or dehydration or trying to get to the downstairs loo?

She's 84 and confabulates a lot. She's already decided that she will take some of the "medicine" in between meals and that the doctor said that was ok. She has no idea how much liquid we're talking about. She finds a 100ml glass to be outrageously huge, and drinking even half of that to be an unreasonable request. During the many months of treatment for constipation we've failed to get her to drink more than 150ml mls a day that isn't tea. At the hospital for several hours today my husband and I both peed multiple times, but MIL not at all.

What the hell am I going to do?

 

[Lancashirelady]

Did the person who decided on a colonoscopy actually meet your Mum? Mine saw a specialist on Monday, who immedately said that a colonoscopy was not appropriate and is sendng her for a CT scan instead. I'm fondly assuming this is because she could see that Mum wouldn't be able to deal with the preparation though assuming the medical profession have any common sense is a bit of a leap of faith. I was strongly tempted not to even take Mum to the appointment as I think dragging an 86year old with dementia possibly through a whole load of treatment is not necessarily in her best interests. We'll see what the CT scan comes up with......

 

[CeliaW]

I have had colonoscopy myself and also worked in Radiology for many years so dealt with the effects or not of bowel prep on patients of all ages.

For a relatively fit, compliant adult, colonoscopy isn't fun, it's uncomfortable but it's OK.

For someone with dementia in anything but very early stages, personally I would say no. The chances of the medicine being effective enough are minimal so the results won't be good. Its quite strong, so she could end up dehydrated and that will greatly increase confusion and lack of co-operation. I would suggest ringing the endoscopy suite nursing staff and telling them what you have written here and your concerns. Have they considered CT? Or flexible sigmoidoscopy that "just" requires a small enema prior to it which can be done by the nursing staff prior. (simpler although still not easy) What do they intend to do with the results if they get any?

I don't mean to be a gloom merchant but I do think you are right to be so concerned - I certainly wouldn't agree to my Mum having one.

 

[joggyb]

I have had colonoscopy myself and also worked in Radiology for many years so dealt with the effects or not of bowel prep on patients of all ages.

For a relatively fit, compliant adult, colonoscopy isn't fun, it's uncomfortable but it's OK.

For someone with dementia in anything but very early stages, personally I would say no. The chances of the medicine being effective enough are minimal so the results won't be good. Its quite strong, so she could end up dehydrated and that will greatly increase confusion and lack of co-operation. I would suggest ringing the endoscopy suite nursing staff and telling them what you have written here and your concerns. Have they considered CT? Or flexible sigmoidoscopy that "just" requires a small enema prior to it which can be done by the nursing staff prior. (simpler although still not easy) What do they intend to do with the results if they get any?

I don't mean to be a gloom merchant but I do think you are right to be so concerned - I certainly wouldn't agree to my Mum having one.

I agree with Celia. If this is avoidable, then avoid it. Get onto the nursing staff asap, and/or ask to speak to the doc or consultant.

 

[JayGun]

Did the person who decided on a colonoscopy actually meet your Mum? Mine saw a specialist on Monday, who immedately said that a colonoscopy was not appropriate and is sendng her for a CT scan instead. I'm fondly assuming this is because she could see that Mum wouldn't be able to deal with the preparation though assuming the medical profession have any common sense is a bit of a leap of faith. I was strongly tempted not to even take Mum to the appointment as I think dragging an 86year old with dementia possibly through a whole load of treatment is not necessarily in her best interests. We'll see what the CT scan comes up with......

Yes, he met her today. She nodded and "yeah, yeah yeahed" through the appointment but hasn't the foggiest what he said or what's going to happen. She was fairly repetitive and just kept saying she couldn't understand WHY this was happening to her but didn't say very much else. The doctor explained to her over and over again that she mustn't take this medication now, it was for the day before the procedure and she "yeah yeah yeahed" him and then the very first thing she said when we stepped out of there was "Oh more pills, have I got to take one now?"

She's in quite a lot of pain, so Id like them to do something but I'm just not sure this is the right thing.

 

[JayGun]

I have had colonoscopy myself and also worked in Radiology for many years so dealt with the effects or not of bowel prep on patients of all ages.

For a relatively fit, compliant adult, colonoscopy isn't fun, it's uncomfortable but it's OK.

For someone with dementia in anything but very early stages, personally I would say no. The chances of the medicine being effective enough are minimal so the results won't be good. Its quite strong, so she could end up dehydrated and that will greatly increase confusion and lack of co-operation. I would suggest ringing the endoscopy suite nursing staff and telling them what you have written here and your concerns. Have they considered CT? Or flexible sigmoidoscopy that "just" requires a small enema prior to it which can be done by the nursing staff prior. (simpler although still not easy) What do they intend to do with the results if they get any?

I don't mean to be a gloom merchant but I do think you are right to be so concerned - I certainly wouldn't agree to my Mum having one.

I have been googling for ages trying to find the name of the department to ring. Thanks ever so much Celia. I'll call them now. I spoke to someone in the hospital social work department who was completely unhelpful. She said that MIL wasn't their responsibility until she was actually admitted, so their was nothing they could do. She told me to call Adult Services - who were perplexed because this is clearly a hospital/medical thing.

 

[JayGun]

I agree with Celia. If this is avoidable, then avoid it. Get onto the nursing staff asap, and/or ask to speak to the doc or consultant.

Thanks lovely. I will. I'm looking up the numbers now.

 

[Lancashirelady]

Can't the GP give you the info - and prescribe some pain relief for your poor Mum?

 

[Canadian Joanne]

I agree with everyone here - if it were my mother, I would simply cancel the procedure. After all, we are not obligated to do all the things they want. If you feel it will be impossible to carry out the prep as it should be, then I don't see the point in having the procedure done. I think it would only cause more harm than good.

Any idea what is the pain from? It may be constipation, particularly if she's not taking in adequate fluids.

 

[JayGun]

Can't the GP give you the info - and prescribe some pain relief for your poor Mum?

The GP has not been wildly helpful in this regard. She visibly sighs when we walk in. When MIL is not "yeah yeah yeah"ing without understanding what's being said to her she's "No No No"ing with any understanding either - so she is hard to help.

She's been seeing the GP for this issue since early September but I had to make a bit of a fuss a couple of weeks ago to get her referred because as the GP put it. "she says No to everything I suggest".

MIL is the very definition of non compliant. I know she's difficult but we have half killed ourselves to get her to take the laxatives that were prescribed regularly enough and at the right times - but she's no better, so we have to move on to the next thing

 

[JayGun]

I agree with everyone here - if it were my mother, I would simply cancel the procedure. After all, we are not obligated to do all the things they want. If you feel it will be impossible to carry out the prep as it should be, then I don't see the point in having the procedure done. I think it would only cause more harm than good.

Any idea what is the pain from? It may be constipation, particularly if she's not taking in adequate fluids.

The pain is upper abdominal, and she's had enough violent clear outs now that everyone agrees that she's not impacted at all, but she's not really pooing either. And the pain continues. She's also having headaches, dizziness and light-headedness so between the diarrhoea from the laxatives and feeling woozy and wobbly she's really not having a good time at all. She can't even pop next door to her friend for a cuppa because the loo is upstairs and she can't rely on being able to make it, amd is worried about falling down strange stairs.

 

[Linbrusco]

Oh dear
At the very start of Mums dementia she had ongoing bowel issues, mainly constipation.
It wasn't being managed by lactulose.
Her GP sent her first for a CT colonography. Bowel prep was relatively easy. A sachet of bowel prep to add to a glass of water and an enema. Mum survived relatively OK.
It found scarring on her bowel, so they wanted her to have a colonoscopy.
Bowel prep for that was horrendous. Mums poor bottom was so sore. Going to the loo distresses her.
They found several polyps and one suspicious one, so she had to have another colonoscopy and removal of polyps. Another horrendous bowel prep. I had to write all the instructions step by step and the times she had to do everything.
The colonoscopy she copes with, but the sedative given did have quite an effect.
The suspicious polyp looked cancerous.
She was booked for surgery, and part of her bowel removed.
The polyp was cancerous, early stage with no spread to her lymph nodes so no further treatment necessary.
Thank goodness she didn't need a colostomy bag

2 yrs on, she was called up recently for another colonoscopy scan.
My POA for health & welfare is now in force. Mums GP said to contact the surgeon with concerns, as we feel at her level of dementia now she just would not cope or understand, and think that we are torturing her by withholding food, and her having to go to the loo copious times... And as for having an enema I'm not at that stage that I would administer it to Mum myself
Her surgeon, said that I would have to keep an eye on any new symptoms, and for 6 mthly blood tests for a CEA marker, which is a carcinogen level for bowel cancer.

 

[brambles]

My mum has just had a CT colonoscopy ( the consultant said this was kinder than a normal colonoscopy) and a gastroscopy.

I didn't want her to have either (she is 89), but she insisted she wanted the tests even though she quickly couldn't remember why or what they were for.

The CT colonoscopy involved a light diet and a short fast and 2 doses of gastrografin. I think these were about 100mls each time. She had some diarrhoea but it was not too bad. I stayed with her throughout the prep for both tests and had to keep a close eye on her food intake. Fortunately she is cooperative but of course just forgot what she could and could not eat.

The actual examinations she coped with really well, everyone was really kind and understanding.

Now they have found something suspicious on the gastroscopy and we are awaiting biopsy results. This is the worse bit, because, what will I do if it turns out to be something sinister?

 

[CeliaW]

JayGun - I agree it needs some form of investigation but not the colonoscopy. Even Ultrasound could give them an idea if there is a mass or impacted faeces anywhere (which, trust me, can be resistant to clear outs)

I hope you get to speak to the Endoscopy Nurses - another possibility would be if there is a Continence nurse you could speak to who would be able to advise on treatments for her bowel that would not have the light headedness etc that you mention. Sorry if I have missed it somewhere but is she losing weight? Does she have a previous or long term issue with her bowels that has worsened? previous diverticular disease for example.

In my opinion, given my limited knowledge of her (and I am not a medic - only an ex Nursing Sister!) I would say that a non constipating pain relief needs to be sorted (not codeine based), her fluid intake needs to be upped if at all possible and the lowest level of interventional means used to see if a cause for the pain can be identified. Starting at Ultrasound and then going to CT (flexible sigmoidoscopy will be of limited value given where you say the pain is, particularly if more to the right hand side) There are varying types of laxative and dietary interventions that can be tried to get her bowel habit more regular if there isnt a mechanical cause.

I think the point that you need to emphasise re the colonoscopy is that she is unlikely to co-operate with the preparation leading to failed procedure, increase in her confusion and agitation due to dehydration and the resulting imbalance of body salts and no clinically significant or accurate result likely to be obtained.

Its tough isn't it? I understand you wanting to get something sorted but the clinicians often just don't think through the implications and it is definitely not one size fits all.

Good luck - if you have any "technical" queries or questions re terminology - please do PM me and I will be happy to help.

 

[susy]

Just a point to try and help a tiny bit... If she likes jelly, it's a great way to get fluids into her. Although jelly is a solid, it has a high liquid content so that really helps (if she will have a bit I it)
I agree that this is too harsh for her. I'm guessing the GP has done as you have asked by referring you but the specialist doesn't realise the severity of her capacity to understand and to cooperate and therefore has gone along with what the usual process is. Another way of getting your message across would be to phone the hospital and ask for his secretary and let her know your concerns and see if she will pass the message along and see what can be done. When is this procedure due to take place?

 

[witsend~1]

Has anybody had to take their loved one with dementia for a colonoscopy?

The actual colonoscopy itself is not my worry, I am rather selfishly wondering how the prep is to be managed.

I can't get MIL to drink 75ml of liquid so how am I going to get her to drink 5000ml in the morning and 5000ml in the afternoon? (OR vice versa depending on the time of the appointment.)

As for not eating for 24 hours plus. It's going to be 24 hours plus of raging and crying and running round to the neighbours, and calling the police, and saying we're abusing her. And the house will have to be cleared of food otherwise I'll doze off sometime during it and she'll be feeding her face.

Her bedroom is upstairs and the loo is downstairs so she probably won't be able togo to bed and sleep, and if by some miracle she can, what if she falls down the stairs because of hunger or dehydration or trying to get to the downstairs loo?

She's 84 and confabulates a lot. She's already decided that she will take some of the "medicine" in between meals and that the doctor said that was ok. She has no idea how much liquid we're talking about. She finds a 100ml glass to be outrageously huge, and drinking even half of that to be an unreasonable request. During the many months of treatment for constipation we've failed to get her to drink more than 150ml mls a day that isn't tea. At the hospital for several hours today my husband and I both peed multiple times, but MIL not at all.

What the hell am I going to do?

My OH had one last year and it was a nightmare getting him to drink the foul tasting prep. He's also diabetic so the food thing didn't help either. The result was a sleepless night, a heavily soiled bed and mattress and a last minute dash in rush hour traffic to make the appt time because I had to persuade him to attend as we didn't (meaning I) want to go through that again! Happily the results were clear with a small amount of diviculitis.
Best of luck x

 

[CJinUSA]

Hello. Let me begin by saying I am not a doctor. What you describe sounds more like an aneurysm in the colon, or something similar, and it probably *does* need to be looked at. The thing is, I'm not sure a colonoscopy would help but might instead exacerbate the situation.

My OH was the legal guardian for an 84-year-old man about 15 years ago. During the night one night, they transferred the man to a different - and much more distant - hospital. No one called us to tell us about this. Once he arrived at that other hospital - at 2 AM! - they performed (because he said they could do so, but mind you, the man had dementia - so he was just being compliant but didn't understand, we are sure, what he was being told) a colonoscopy. Well, they broke his colon wall and didn't pursue it when the next day he said he was in terrible pain in his belly. He got peritonitis from the colon break, and he was dead within a week and a half.

I absolutely do not want to add to your concern, but it does seem like this is a very serious situation that the GP and surgeon really need to attend to while KNOWING THIS IS AN ELDERLY PERSON WITH DEMENTIA.

I'm so sorry this is happening for you. I hope and pray we don't end up in a similar situation with my mother, who lives with us.

 

[Pottingshed50]

Having had this myself , I would scream out , No it is not suitable for her. I took the meds as prescribed and spent the next 12 hours on and off the loo with uncontrollable runs , it was the most horrid experience I have ever been through. You are supposed to have stopped going before you get to the hospital but as my appointment was 8 in the morning , I was still going and had to wear Tenna Pants as that was the only way I could get there in one piece. Despite these I needed to change as soon as I got to the exam. The nurses were very good and said dont worry we can still do the exam. I was petrified they would send me back home again. So please do not put an elderly person through this. Not only is it horrible you get so sore.


Edited as I can see a typo

 

[Fred Flintstone]

I had a barium enema x-ray. Prep for this was two doses of picolax about eight hours apart with a low residue meal in between. Unpleasant and you need to have your own loo.

I can't see anyone with more than mild dementia managing that.

I then had to have a flexible sigmoidoscopy. Prep for that was phosphate enema, hold on, and then DASH!

If even some of the information can be obtained by CT or ultrasound scanning push for that. From the sounds of it, a non-compliant patient will have received a traumatic period of preparation to no benefit, except that the hospital will be legally off the hook..

1. Lastly, what are the potential benefits?
2. What is the patient's life expectancy?
3. By how much will that be extended by any available procedure?
4. How long would it take the patient to remobilize after a general anaesthetic?
5. Would she ever re-mobilize at all?
6. Would time bought by treatment allow a good quality of life?

The only real justification that I can see is if a diagnosis is expected which will make the patient more comfortable in the short and medium term. Otherwise, can you not muddle through with short term treatments?

 

[Ballykeith]

Just checking

I've come late to this but I just thought I should ask you to check the figure of two doses of 5000ml. I know different bowel preps have different requirements, but this does sound a huge amount.