Hello everyone,
I've been a lurker on this board for some time, reading the cockroach thread etc and picking up bits of info here and there, but I think I need some pointers for my specific situations.
I feel thoroughly lost in the process.
Mum was admitted via A&E a few weeks ago to a ward in the hospital. She was suffering from dehydration and was stumbling around, not making much sense. We suspected she had a UTI, and she did (e-coli). She self-catheterises as a previous infection caused her to lose muscle tone in her bladder so she can never fully release the urine. That would obviously be catastrophic, so she catheterises herself and is good at it.
After many, many blood tests, cannulas, collapsed veins etc they managed to get some IV anti b's into her along with fluids. Her sodium constantly levelling out at 131 which is low, but she has to drink so much to flush her system, she's got no choice but to take in all that water.
She has had a hip op recently. The other one replaced 4 years prior.
She is constantly, and I mean constantly stumbling. She'll see the bed/chair in her sights and almost throw herself down into it.
She uses a stick to twirl around, not to walk with. She rushes with a trolley. She rushes when linked to us.
She constantly smells of either urine or faeces (and I could cry my heart out, writing that). She taps her right hand against her chest or the bed or whatever, constantly. She's there in the head, but vacant.
She can't walk straight, for some reason. It's odd.
She has lost her appetite. She doesn't want to make food because she doesn't want to eat it.
She is chronically tired - I mean constantly plagued by this crushing fatigue. She wants to be referred to the CFS clinic, but what are they going to do? She's obsessed with it.
When she does go on walks, it's for way too long. She went on a walk with her sister (very capable, over from Ireland) yday and as usual they went too far and she messed herself (number 2).
Her house is now gross again, apparently. Even though when she was in hospital I went through it like a whirlwind and cleaned it from literally top to bottom.
The house is falling apart. She lives in one room in the winter, the house is extremely cold. She won't move. She won't visit is (I live about 4/5 sometimes 6 hours away) citing various reasons "oh, I have an eye test" (which she got the bus to, but fell on the street). "I have a scan on my bladder" which never happens as she never dips clear, there's always something wrong (although not at the moment, thanks to all the IV anti b's she's had).
I believe she should have had a team assess her house and provide her with an alarm? That hasn't happened.
As I said, I live far away and this is all falling to my poor sister who lives close by - she doesn't mind, of course, but she is a single parent and is starting a new job soon. She won't have time to sit with mum all day/night.
Every time mum's sister visits, I get a call from her and mum's best friend (I call it a doom call) where they tell me she needs to be in hospital (why?) and that she can't be left alone - but mum refuses to come to me, she won't go to residential care, she has capacity...there's no need for her to go to hospital, because (as we were told, quite fucking clearly, they treat what's wrong with that person there and then in front of them - then they pass them back to the GP for referrals to MOPS, frailty, falls etc).
She's had all the tests, save an MRI, and save for sodium is good on paper. There's nothing obvious going on like brain injury etc, so I guess I'm asking - what do we do next.
I am so upset. My poor, fire-cracker of a mother. She was an NHS nurse, an immigrant who trained in the hospital she just left. She then had a nursing home for years with her best friend. From being someone who'd come down to us on the train for a week and when I got home from work would have painted the shed/sorted the cupboards, to this shell of a woman is hard, harder even than when our dad died of oesophageal cancer 2000.
Can anyone help? What next?