Deepest sympathies to flower1, whose news I have only just seen on the separate thread.
I was going to delete this post, but thought I would leave it for others for whom it remains an ongoing journey.
My mum has been in res care for nearly 4 years now - mobile and in mid stage for 3 years, and in the nursing unit since last May. Between May and July last year, she went from being mostly wheelchair-bound, but otherwise able to sit in the lounge and eat full meals at a table, to being bed-bound, on transdermal pain relief patches, and taking only fluids for 4 months from June-September.
Around August last year, she had become so frail (and hallucinating wildly) that I thought she had only days at most to live; staff believed this too, and as I live 100 miles away, I took to staying over in hotels to be nearby in case of emergency, as I had always determined to be with her to the last (we are each other's only immediate family).
However, after several weeks of this, including about a fortnight when I spent all day every day at her side and overnight too on one occasion when I had to drive all the way back after it had seemed safe to go home for a while (staff called me back within hours, because she had gone cold and unresponsive), in fact she rallied and started to eat solid food again. By late September, she had stabilised - eating fairly regularly (albeit tiny amounts), drinking, and even being able to sit up in a chair for a couple of hours some days. I returned home and tried to get on with my life, reverting to visiting as usual at weekends - but one year on, we seem to be heading for the same cycle again.
Last week, she developed a sudden chest infection and I thought we might be into last stages again. She seems to have been responding to meds in the week, so I'll be going down again at the weekend, rather than making the emergency dash back that I anticipated last Sunday. It is so emotionally draining. I thought I had come to terms with it and was glad I'd had that time with her last summer, at least to reassure myself that I had done as much as I possibly could and realised that my presence was no longer crucial to her (as it would have been pre-dementia). But now I am feeling weepy and hopeless again. I know that's probably not much help, except to illustrate that you need to pace yourself somehow.
When you first get into the trauma of end stage, everything can seem like an emergency and you feel you have to put everything else on hold to down tools at a moment's notice. Our collective experience here just goes to show that there can be many "reprieves" (although they may not feel like that). On the other hand, in the time that mum has been bed-bound, doubly incontinent, and often barely conscious in her nursing unit (although still verbally articulate and relatively alert some days), I have seen several more mobile people in the residential unit die suddenly of e.g. heart attack, stroke, or infection.
Like many of you, I looked to the staff and medics for guidance (including a senior dementia nurse from the RCN and a family member, who is a GP), but the most they were able to tell me is that the crucial turning point is when the person stops taking fluids or when they can't swallow any more. Apart from that, they can go on for months or indeed years, so long as they take some (fortified) fluids. There were occasional days when mum took hardly any liquid, but she never fully stopped. I was amazed that she could last for so many months with no solid food, but she did and is now eating quite well again.
It is incredibly cruel and mentally debilitating for all concerned. But at least it may help to know that our individual situations are not unique. So to be fair, the staff and doctors are probably not keeping anything from you, it's just impossible to know either way. All the best to fellow travellers.
I am new to this forum and this is my first post, so please excuse me as I try to ask my questions without going on too much.... My mum is in a nursing home where she has been for the last 4 years after having a stroke. She has vascular dementia and now cannot talk, walk, is incontinent, has to be fed her food (creamed fortified diet) and does not really know me anymore. She sits in her chair ( has to be supported as can lean too much) and just looks around in to space (glazed look) and also seems to sleep a lot too. I have been told that this is last/final stage vascular dementia but get told different things about it eg: mum could go on for years like this or not?? I feel her quality of life is no longer and how long can you stay like that? She seems to be drinking and eating ok at moment (fed by care assistants) but I have noticed her coughing after every drink swallow or tiny piece biscuit when I feed her? Just feel confused and would like to see if anybody could give me a little info or advice if you are also experiencing this or had been. Thanks x
