Colonoscopy for Mum, What a worry

[Jackie B]

I have been told Mum has anaemia and has a colonoscopy booked for Wednesday( I got the letter Yesterday).

She lives alone and has done really well coping with Alheimers since around early 2003. She has carers going in twice a day and attends day care 3 times a week. I am her main carer and I am in the process of considering the next move because she seems so vulnerable, she's like my little girl and I know we need more help. We have installed wander alarms, smoke alarms and door open alarms which all seem to be helping to keep her safer.

Alzheimers poses so many worries which I deal with as they happen, or try to be one step ahead of. However, I am really worried about the colonoscopy, the effect of the medication she will have to endure the day before, the not being allowed to eat, the effect of the sedation on her, the proceedure itself, how to juggle my life, children, work whislt remaining calm and patient with Mum et.. etc..

Has anyone else had to see their loved one with Dementia through this?

I suppose I have come back to talking point again now as I tend to when life feels so complex and sad.
Jx

 

[Margaret W]

Dear Jackie

I can't advise, not been through anything like this. Hope someone else can help you. But just to give you a hug.

Margaret

 

[May]

Hi Jackie

What I would be asking your medical man/woman is 'is this procedure really necessary?' I am convinced that unless the medical people say it is absolutely necessary for her well being that you should try other avenues to improving her health re the anaemia first. Personal experience of my Mum after surgery talking here, but all IMHO. Hope you can make the right decision for you and Mum. Take care

 

[Jackie B]

Thank you both for your messages. This appointment has come through very quickly so today is the first day I can speak to anyone about it. I will phone the hospital later to see what they say. I thought she would be refered to a consultant who would then speak to me about the necessity of these tests.

First thing is to speak to my boss to get time to make calls and take the next few days off.

I think I'm just really worried about the whole thing, let alone any further complications if they find anything, it just seems too much to think about and organise so suddenly when I still have to see to my boys, job house etc.

Phew....take a breath....thanks so much for your support.

Jx

 

[Mameeskye]

Hi Jackie

This was suggested for my Mum, but as she was already in a NH at the time we felt that this would be too stressful for her...as it was to query a bowel habit that had changed. We thought about what it might mean if she were to have it. They were concerned about cancer.

We thought about her ability to cope with treatment, should this be the case as well as how she would feel about the tests, which she couldn't understand.

In our case we decided to not go ahead. Mum survived quite happily with her dementia for another 3-4 years.

In my case I had already seen what invasive surgery could do to Mum which would have been the next stage had the tests proved positive and I would not put her through that. She was better living with the abilities she ahd left, rather than attempting to treat something and being left with less of herself, if anything at all.

But for each of us it is a very individual decision to make.

I am sure that you will make the right choices for your Mum as you know her best.

Love

Mameeskye

 

[Tender Face]

Hi Jackie. My mum went through this procedure (with endoscopy) a couple of years ago – around the time of her being formally diagnosed with dementia – having undergone the procedure several times over the years pre-dementia. As you say, one big concern is the ‘prep’ – my mum, too, was living alone and I could not by that stage ‘trust’ her to take any notice of notes left as reminders. I seem to recall constantly ringing her through the night before admission to check she wasn’t helping herself to a cup of tea!!!! (I seem to recall I was able to be there to ensure she took the prescribed preparations needed at the right times – but like you – with other commitments could not ‘supervise’ her for the full 24 hours). Same problem post-procedure, as because of the sedation she required 24 hour constant supervision – but when I explained my situation to the hospital they were able to book her a bed overnight and allowed her to stay on the ward until I could get there between work and other commitments next day (very lucky, I know – but it might be worth asking if it helps you out).

Understandably, you will be worried about the outcome and certainly need to be talking to the consultant ... what are they looking for? How long for results etc? What treatment options might be feasible? Is there a non-invasive test they could perform instead?

Has your mother consented to medics speaking directly to you? I found some could be quite pedantic about patient confidentiality even when they knew (or should have known!) the patient had dementia!

I hope it goes well – with luck your mother will have forgotten about any discomfort before the sedation has had time to wear off,

Best wishes, Karen

 

[Nebiroth]

I think a lot of this depends on the age of your mum.

Colonoscopies are nearly always ordered to investigate the possibility of bowel cancer following a symptom such as change of bowel habit or, in your mum's case, anaemia; particularly unexplained anaemia.

But, you have to ask yourself: what would happen if they do discover bowel cancer? It would almost certainly involve surgery, and possibly chemo- or radiotherapy.

You would need to consider how well your mum would cope with all this and her quality of life. Would she be able to understand what was happening and why? For one thing dementia and general anaethesia do not mix well. Any sort of illness can worsen the symptoms of dementia. Then there are the side effects of any other therapies she might have. If she is frail, or lives alone, it could involve long stays in hospital; would she cope?

Sad to say, the general life expectancy of someone with Alzheimer's is about ten years - although some people live much longer, other not so long. It varies greatly from person to person.

It really sounds as though you need a serious chat with whoever ordered the tests (often the GP) and discuss all these things. They will be working on the premise "life at any cost". I'm afraid I personally do not agree with that.

My dad was anaemic and also had a test, but because he could not understand what it was for or why he was having it, and was unco-operative, they decided to do a bowel scan instead of colonoscopy; this avoids all the unplesantness of the day before medication (a very powerful laxative), the sedation during the test and the invasiveness of the test itself. I believe that it's absolutely essential for the patient to remain still during, and he wouldn;t have.

Even in the event he refused to drink the juice provided just before the test but they went ahead anyway. Nothing was found.

I believe that even if cancer had been detected, we would have opted (given the choice) for no treatment. It would have been, I believe, a pointless imposition of suffering to delay the inevitable.

 

[Cl13]

Hi Jackie, I agree you do need to speak to your GP, my OH, I suspect was a lot younger than your mother was sent as a day patient for a blood transfusion, his GP said he was anemic, he had had a number of dizzy spells and had been falling.
He arrived at the ward, got into bed a waited for his transfusion,
The Dr came to inform him that they had decided against the transfusion and were going to do a colonoscopy to rule out any a and all bowel tumors, my OH was shocked as cancer had not been thought an issue till then.
Anyway he did agree to the test, no tumors, it was later decided after further blood tests that he had Pernicious anemia,
Now to me if they had gone down the blood test route in the first place he would never have had to have the unpleasant procedure in the first place.
I have had a colonoscopy myself and the the prep and the procedure are not very nice, but in my case it was the test they needed to do for my diagnosis of Diverticular disease.
I would check for the possibility of less invasive tests first.

Take care Love Lynn

 

[Jackie B]

I just knew comming onto Talking Point would help me.

Thank you all for your support and advise. Having phoned the colonoscopy department it transpires they can not do the proceedure unless Mum has stopped taking her Dipyridamole for 7 days..............huge bit of luck that I listed all her medicines to the nurse I spoke to, not that she asked me to!

Must dash, Mums wander alarm has gone off, thank god my boss let me come home to make the phone calls.

Will consider all your ideas and help...thanx Jx

 

[Jackie B]

Mum (75yrs) home OK.
Appointment now next Tuesday. I have spoken with my brother about some of your points and we agreed to go ahead. Mum having pain today so I told her she has an appointment, she was fine about it but of course will have already forgotten the discussion, at least she didn't freak out.

So now I have time to ensure her meds and diet are right and ask for extra care help to support me.

Feel much better about it now, we will deal with the next bridge when we get to it.

What a great resource this is!

Jx