90yr old nan with dementia, stroke last week - experience?

[ErnesttheBavarian]

So nan has dementia. Can't remember eg her age, where we live, my name, if we have dc etc

Grandad is 92 (nan 90). They live alone together. He looks after her and they, till now, have no support due to his reluctance. They haven't even been to docs really the dementia until v recently, and I don't think anything has been done.

Anyway, last week she had a stroke. She's in hospital and hasn't really been assessed yet as she is basically constantly asleep although she opened her eyes a few times yesterday but that's it.

Has anyone got any experience at all with elderly relatives/ strokes/ dementia?
Clearly they can't return to living independent lives again.

But what is a likely outcome here? We've not got anything yet from docs as she is asleep so not assessed and they have just transferred her to another hospital. (A nightmare 1.5 hour journey for poor grandad)

It's incredibly hard to predict the outcome here because we can't tell how badly the brain has been damaged and how that is going to affect functions like motor control etc. Some people recover quite well, however some lose lots of abilities like being able to eat and drink properly, being able to walk, being able to communicate. And sadly some people do not recover at all.

I'm sad and a bit annoyed for you that after a week you have not been given the opportunity to meet with the medical team who are looking after her. I know she's been transferred to another hospital but the previous consultant should have met with you. If I were you I'd request this meeting ASAP and ensure all immediate family is available. There may be things being discussed that all the family will want to know and hear, and one of those things may be a DNAR (Do Not Attempt Resus) order - I know this sounds scary, but I just wanted to prepare you for them discussing it as it can come as a shock. It doesn't mean that someone is going to die, it just means that if anything does happen they are doubtful resus would work and it would be kinder to not attempt.

The team should be able to give you an update, they won't be able to predict the future, but they'll be able to give you a better idea of whats going on and how you can plan ahead.

In regards to the future, if your nan does recover she will likely need much more help than your grandad can provide. Most hospitals has whats called a Complex Discharge Team, and this team liaises with family, social workers and the HCP team to decide what sort of care and what sort of environment your nan would need moving forward. This can range from being supported at home with a care package put in place, to a place in a nursing home. It'll all depend on your nan's condition, but please don't worry you will not be simply left to sort everything out yourself.

I'm sorry that probably wasn't much help but just thought I'd mention a couple of the practical things. I hope you're all going to be okay

Thanks a lot. I'm not in UK so not in a position to meet with anyone. Dsis has and seems happy but nit much has been mentioned a dnr as far as I know. And nothing in terms of prognosis, as she seems to be mainly asleep.

It's so fru starting being at a distance and relying on other's. We've had 2 previous horror experiences with relatives so I am pretty cycle and conCerne about how open and frank and realistic and honest the doctors are.

EG prev relative was to us in a pretty bad way. Doc kept talking about a good outcome. We finally asked what he actually meant by a "good outcome" , to which he replied hopefully eventually being able to breathe without a machine. Erm... OK. Thus was someone in his mid 60's who up to that point had been very active and we'll and reasonably fit. Not being able to communicate and finally maybe being able to breathe without a ventilator didn't seem so great an outcome for him. 5 months later, after loads of interventions he died. It all seems do brutal and relentless and ultimately pointless.

I'm just concerned that basically being asleep for over a week doesnt seem to bode so well but no one is saying anything.