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Help and advice please - Carers UK Forum

Help and advice please

Tell us a bit about yourself here.

I care for my grandmother full time in her home, she suffers with progressive vascular dementia. Over the last 10 days she has been sleeping in bed until 2-3pm and has lost interest in food all together. She is incontinent and night and can be a struggle getting her to the loo in the day! Usually when she sleeps a lot or is not her usual self it's due to a urine infection or constipation. She has had a urine sample taken which came back clear and her bowels have been open over the last 10 days. Could she be moving onto the next stage in the disease and could anyone give me some advice on what to look for for the last stage? Any help and advice would be appreciated as I am no expert in dementia and am constantly worrying about whether I am doing the right thing with her. Thanks jenny
Hi Jenny, welcome to the forum. Are you getting any help and support? Your GP can arrange "NHS Continuing Healthcare Fast Track" if required, near the end. Might be worth discussing with him.
When my mum was nearing the end, I googled "Signs of Dying" and found some very good articles explaining why the body doesn't want much to eat or drink. Although mum was in a nursing home, so I knew they were doing the right things, it was very helpful for me to understand why they did not force her to drink more.
I have now lost six close relatives, including my husband. If there's anything you would like to know about what to do, where to go etc. etc. just ask away.
Hi Jenny
It's not my area of expertise, but I think you need a ((((hug)))
Xx MrsA
I think it would be helpful if a district nurse came out to see your gran - better still, a hospice nurse. In my experience, nurses are very good at 'staging' patients like your gran who may be, as you fear, entering into a yet later stage of the slow decline towards the end of life.

Nurses have so much experience, have 'seen it all before', and can, to be frank, very possibly be more accurate than any GP maybe? (Careworkers who have cared for very elderly people right to the end may also be very knowledgeable.)

Nurses know what end-stage is like, and whilst no one can know for sure how steep the decline will be, or how rapid, they should, I would hope, be able to guide you along that journey at your grandmother's side.

I do know from my SIL's mother with vascular dementia that the final stage seemed to be almost complete 'inertia'. When she wasn't asleep she simply lay with her eyes out, seeing nothing, almost completely unresponsive.

How responsive is your grandmother still?

When death is VERY near, within a day or two, the body loses the swallowing reflex, so there is a danger that food or liquid can go down the wrong way, into the lungs, and cause choking. When this stage is reached it has to be Nil by Mouth, which can sound harsh, but do remember that by then the patient will truly not want any nourishment. It can be hard to accept, but by that stage "They are not dying because they are not eating - they are not eating because they are dying". As for liquid/water, again, when they are very, very weak, they need very little fluid anyway - just by breathing they create what is called 'metabolic' water, ie, it's a by product of respiration, and so will be reabsorbed into the bloodstream. You can keep their mouths moist with a damp flannel, or little 'buds' which the nurses will give you, dipped in water to ease around their mouths and lips.

Towards the very end - say the last few days maybe - you may notice her skin mottling. This is because her circulation is slowing down. The nurse may suggest you move her limbs, bending and extending gently, to improve circulation.

I'm so sorry if this is 'too much information'. I do remember, if it's any comfort to you, that my SIL said that her mother passed away eventually very peacefully, and I do hope that this is so for your gran, when that time does eventually come.

Kind regards at a very sad time, Jenny
I may be digressing here. if so I apologise.

When my Auntie ( my mums sister) was in hospital, I asked the ward to contact the Hospital Chaplain who
came to my aunts bedside . Even though my aunt appeared to be in a coma, I feel that his words and blessing got through to her.
I hope this helps you.
Colin, most definitely! That was something I didn't mention - that hearing is, we are told, the last sense to leave us, so yes, most definitely 'keep talking' (not endlessly of course - they might like some peace and quiet sometimes!), but definitely say the things you want to say to them. Even in a coma, who knows what 'gets through'. I'm sure we've all read news articles about those who manage to wake from a coma, and then recall information that was given to them during the coma when they appeared completely unresponsive.

As for chaplains, this is very personal, but if the patient found that important in their lives, then I would suggest that it is a mark of respect to 'see them off' in the way they would want, even if they can't express that wish any more? And surely it brings a degree of comfort - and also to relatives perhaps? But, as I say, it's a personal thing.

As well as hearing, surely touch is important too. Simply holding their hand if nothing else. A very human instinct.
When my dad was days away from death, very ill in the hospice, mum and I sat with him, and chatted about things we had done when we were younger, our favourite walks, etc. etc. Dad appeared to drift in and out of consciousness. However, when I asked mum what they grew in a greenhouse we used to walk past regularly, dad immediately said "Grapes".
He was on a morphine driver so pain free, and that made it difficult for him to keep his eyes open, but he wasn't asleep. I had a similar experience after an operation, mentally I was completely alert, but my eyelids wouldn't stay open and I couldn't talk without a super human effort.
As hearing is said to be the last sense, it has previously been suggested that some gentle familiar music might help.
Hi Jenny
Is it possible that Grandma has an infection? My father with Vasc Dem was similarly unresponsive about a month ago and had stopped eating, and drinking very little. He has had large does of anti biotics since and has now picked up a little and certainly has his apetite back. Please don't dismiss the idea of possible infection.
Hi Jenny
First port of call is always GP, if only to rule out simple medical causes.
None of us on here are qualified doctors, and even such wouldn't diagnose without seeing.
Kind regards
MrsAverage wrote:Hi Jenny
First port of call is always GP, if only to rule out simple medical causes.
None of us on here are qualified doctors, and even such wouldn't diagnose without seeing.
Kind regards

I fully agree with MrsA's post. Please request a home visit by GP or District/Community Nurse so that they can see the patient and give you appropriate advice.

Hubby has advanced vascular dementia and when he has urine test the first one can come back clear but second one confirms UTI.