Do we need to start preparing ourselves mentally for the transition into the last stage of this disease?

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Hi, I care for my grandmother full time in her home, she suffers with later stage vascular dementia. Lately she has been sleeping in until 3-4pm in the afternoon and has lost her appetite. We have kept her in a routine and active for the last two years but I fear She is starting to give up! Is this normal?

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She may have had a more major brain "event". A CT scan might show it; but then again since it isn't likely it would alter her treatment or management you may feel there isn't much to be gained through the investigation. Have you reported the change in her routine to her doctor?
My Grandma is the same way. She went from active and sleeping 8/9 hours a day and eating 3 sometimes 4 meals and snacks, and almost over night she lost her appetite and started sleeping 20+ hours a day. The best thing to do is tell her doctor about this, but mine said that it's normal with people with dementia. It just means they started the next stage.
I had a gp out last week and he will be coming again tomorrow to take some blood samples. Normally when she is unwell it's due to a urine infection or constipation however both of these issues are fine so I'm at a loss as to what is going on with her! Just very hard to know what to do, we are trying to get her up to get fluids and food in her but I'm starting to wonder whether letting it take its course is perhaps the best thing for her?
It's certainly a reasonable option to consider. Also, it may be the only proportionate, humane option. As the doctor will have actual test results before long and may be able to give you a clear prognosis, perhaps the best approach until then is the old classic: 'hope for the best, prepare for the worst.'

Meanwhile make sure she always has fluids available and is regularly offered small, tempting helpings of food; but don't force her out of bed for it unless she seems willing to make the effort. Are you managing with her personal care all right?

One more question (sorry!): did your mother ever give you any indication of what her wishes might have been? You may want to discuss with the doctor, when he visits tomorrow, what to do in the event of an emergency. One tends to call an ambulance as a reflex, but that isn't always best - see what advice he may have to offer.
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Sorry (again) - I've just realised how gloomy my post was. I have to tell you that my mother went through four or five weeks like this after two slight strokes, and then lived for more than two more years. Truly, there is no certainty.
Thanks for you help, it's nice just to have some advice from people who have been in the Same situation. I think we have tried so hard to keep her going and in a routine it's just heartbreaking seeing her slowly deteriorating infront of my eyes.
Sorry I didn't answer your questions! My dad has power of attorney but lives 3 hours away so rarely comes over and my auntie (my nans daughter) lives in Australia so in terms of the decision making over her health if she deteriorates it's down to me so every time she has had a hospital stint she has been treated and an ambulance has been called straight away. I'm not to sure if that can be changed at this point as she has no cognitive ability to make that decision?
Are you in the UK, Dodel?
I am yes
Ah! That makes life a bit easier.

Ask your GP about a Community DNACPR. It's an official form held at the GP's surgery with a copy at home which will then authorise any paramedics attending not to crush your grandmother's ribs in an attempt to restart her heart, should that arise. The CPR bit refers *only* to cardio pulmonary resuscitation: it will not prevent her being treated appropriately for any other symptoms or problems she might need help with, so you should not feel that you are depriving her of medical attention.

If your grandmother lacks capacity, and your father has a Health and Welfare LPA, he needs to take out the LPA form and read through her instructions. It may authorise him to sign the form for her, or she may have ruled it out. I can't remember offhand what the form says about people signing for the person it applies to - but your GP will certainly be able to tell you, and in fact there is an NHS leaflet explaining it all... which I've put somewhere... anyway, he'll be able to email you a copy if he hasn't got one on him.

Mind you. If your father only has LPA for Finance, and you are your grandmother's primary carer and de facto next of kin, then I'm not sure what the procedure is.

In any case you'll want to think it through. And have you had a chance to talk to your father and aunt about all this? Would it be possible to Skype or FaceTime them together, would you like to do that?

More importantly, how has your grandma been this evening? I hope she's comfortable - and I hope she'll set your mind at rest by eating or drinking a little something. Take care of yourself, too, keep in touch when you can. Best of luck.

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