Invasive medical procedure

[NotMeNoNo]

Hi, my DM77 has mid/late stage mixed dementia and is cared for at home by Dad80.
She has lost a lot of weight over last 2 years and has ongoing digestion issues, takes daily laxative but it's getting hard to tell how much discomfort and how much is anxiety/projection/general distress.

She saw a gastroenterologist last week (referred over a year ago) who has recommended ultrasound and endoscopy (precautionary,) Dad seems to think she'll be fine

Has anyone had experience of a PWD having an endoscopy/colonoscopy and how did they manage prep/procedure/aftermath? I'm worried she will be so distressed it will accelerate her decline. She gets so anxious about even vaccinations she thinks they are going to cut her arms off. She isn't so far along she will forget it next day.

Oh gosh, that’s so hard. Honestly, my mum is mid-stage but even when she was early on, she developed huge fear of anything medical.

I have made the tough decision to avoid all medical stuff with her. She’s fine with vaccinations, and I accompany her on an GP or Memory Clinic and dentist. But anything else is a no. Partly even getting appointment letters through the door can send her spiralling for days.

Good luck with your decision. If you decide to go ahead, try to anticipate how best to support her. Speak to charities (including carers charities) and the clinic in advance.

It’s a hard decision to make either way.

my mil - I was her full time carer, she had mid to late stage Alzheimer’s and would remember things with promoting but was in a care home. Mil had heart issues and the consultant decided a pace maker would work well. I should have said no, but frankly was tired and overwhelmed with the stress of decades of looking after 4 parents with various ailments from Parkinson’s to Alzheimer’s.

It was something we all regretted from the moment the operation was done. She kept trying to rip the stitches and the pace maker out for weeks. Between care staff and myself we had to try and sit with her 24/7. Follow up appointments with cardiology were hugely stressful for her. I should have been much more forceful in saying no.

I think if she's really anxious about vaccinations, I can't see how she would cope with colonoscopy or endoscopy. Would she be able to cope with any treatment resulting from these investigations?
My dad mid stage Alzheimer's when his Non Hodgkin Lymphoma returned with a tumours in his digestive tract. He was offered chemo in tablet form but would have to regularly be monitored at the hospital.
He couldn't cope with the travel to his GP (less than a mile) let alone to the hospital 13 miles away.

Thanks that's helpful. I'm going to discuss with my dad tonight, and try to attend future appointments with them

You can use an Abby Pain Scale in people with dementia to assess pain where you can't get a reliable history. Available on line and you can use this yourself.

If mum has mid/late stage dementia, think very carefully as to how far you want to go. There is only ever any point doing an investigation if it would change your management. If there is a chance that it would reveal something that you would definitely treat, then it could be worth it, but you need to ask what would be the harm in just assuming she has this thing and treating empirically eg if they thought she had a stomach ulcer, you could give the treatment without 100% needing g confirmation that she has an ulcer.

The test would very likely need general anaesthetic to achieve, and these tend to worsen dementia, at least temporarily.

It turns out that an enema and (flexible?) sigmoidoscopy is being proposed. I do think she'll find both of these quite frightening. I'm 99% sure that her discomfort is constipation-related, her fluid intake, diet and mobility are all not great.