Can I ask for some advice? Or not even really advice, but general thoughts on situation with my Mum?
*I've come back to the top to note that I've realised I'm writing a bloody essay - if you have time to read and offer input, I would appreciate it.
Mum has Alzheimer's and also Primary Progressive Aphasia, so can't speak, so she needs us to advocate for her all the time.
She's currently in hospital - she's been in for nearly 10 weeks now and we know that she can't return to her previous place in a care home as she will need nursing care. We've been told that she is close to qualifying for continuing health care and that she'll definitely qualify for funded nursing care top up.
She went into hospital with delirium that resulted from a UTI that resisted all the antibiotics the GP threw at it and turned into sepsis. The sepsis has been treated and there's no lingering infection; the delirium remains.
It is hypoactive delirium so she has become much more passive and sleepy and can't do anything for herself that she was doing a couple of months ago (eg she was eating, walking up and down stairs, going to the toilet - v hit and miss but still - and dancing to music). Now she is largely bed-bound, although on a few occasions she's been able to sit in a chair if helped to transfer by two physios; she can't feed herself and takes a very long time to swallow any food she takes.
She only has soft food and has thickened drinks to help swallowing. She doesn't eat much but on good days will drink from a sippy cup, holding it herself on a better day and drinking when helped on a 'normal' day. Dad and I visit every day and are now used to hospital visiting. We help to feed Mum her meals etc.
On a few occasions since she's been in hospital, she's had days when she has been very sleepy and hard to rouse, and on those days she eats and drinks even less, which generally leads after two days of this to much deeper sleep/unconsciousness. When she's like this, she will perk up as if by magic if given overnight IV fluids - the next day, she will be recovered enough to eat and drink so it seems to break the downward spiral and get her back to her new baseline, which is much worse than before she went into hospital but allows her to smile and sometimes recognise us and to interact with us and with carers.
Today is day two of another dehydration downward slide so I talked to the doc and suggested iv fluids, which he has given. He talked, though, about what advance directives we had discussed. We've got a DNR in place that says no food/fluids if unlikely to lead to meaningful consciousness, but that's not the case here as we have seen repeatedly the return to consciousness and alertness after fluids.
No one has said that Mum is on an end-of-life pathway - and we've been told that if this were the case, we'd be told! However, I've done a bit of googling about reduced appetite and increased sleepiness and it keeps coming back to say it is part of the process of dying.
What I am wondering is whether I'm doing the wrong thing in advocating for fluids. It's not causing any odema at the moment and there doesn't seem to be any real downside except the discomfort of the cannula. I can't imagine not wanting Mum to have the level of recovery that we see when she's hydrated, and I don't want her to die of dehydration when it's so easily preventable/treatable. But am I kidding myself? Is this actually the beginning of the end?
I know that Mum won't get better beyond a certain level and I know that she will eventually die of her condition, which will probably get worse from here. I also know that before Mum's dementia, when she was a nurse, she cared for a couple of friends through end of life care and was adamantly in favour of more life and against assisted dying. She has some quality of life - not much, but she is gentle and responsive and likes music and chocolate and isn't - as far as we can tell - in pain. She has lots of visits from family. My sister in America has just had a baby and is due to come over in September - I would like her to see Mum if possible.
Thank you if you have got this far. I guess what I wanted to discuss is whether this sounds like Mum is actively dying and I should work on recognising and accepting the process and making sure she is comfortable, or if I'm right to keep pushing for her to have basic treatment when it seems to be on a repeating cycle - I know it's an invasive treatment to a degree. No doctor has really resisted the suggestion (this is the fifth time I've asked for IV fluids for Mum over ten weeks) but no doctor has seemed keen to do it either. If they are talking about advance directives at this point, are they trying to get me to see something I don't want to see? I honestly don't know. Mum doesn't seem that ill when she's hydrated, although she can't do much. It might be that what we're now used to as a baseline is clouding my judgement.