Hi all,
So sorry to read about your Mum
@Lottiemoll
I've rejoined this forum after a few years as my Mum has early onset dementia, she's only 59 and in late stage. She went into hospital on 1st May from her absolutely fantastic home where she has a supported flat. She'd been unwell since about mid April when the GP visited and said she had a virus, so gave antibiotics. Her chest was clear and no cough. But she didn't seem to pick up again and appetite was variable, same with drink. She's on a pureed diet and has always had a good appetite but she started holding food in mouth and spitting it out. Then one evening she was being helped to bed and carer tested pulse and oxygen, her saturation vwas dropping and pulse heading to 150bpm. They called an ambulance and we dashed there from over an hour away, I've never seen her look so sick, turns out it was aspiration pneumonia (again). They didn't think she'd last the night. But she did, and has been given excellent care in hospital with strong antibiotics, paracetamol as needed, was on ventilator for first few days, weaned off now.
But she's been having seizures, which they'd suspected at her home. She had three seizures last night, and sodium valporate has been increased.
She's also had a nasal feeding tube in place as she was too poorly to eat. Speech and language therapist seeing her every day, but I was there on Friday and they say my Mum has a weak swallow but not enough to start usual diet again. I'm worried about what will happen next, I don't think my Mum would want a PEG tube fitted and for quality of life I hope she can continue to eat. But what if she can't take in enough nutrition by mouth? I just don't know what to do. I know in the early years of the denentde starting she was in a different hospital and trying to stuff tissues in her mouth or putting a bag over her head ssyins she wanted to die. But the place I got her in to is fantastic and she's been content there, it's the best things can be considering. I wish we'd talked about what she would want before it got to know, when she can't tell me what to do for the best.
I'm an only child (albeit 37) with no other living relatives, so it is hardgoing. My poor Mum is in hospital over an hour away from where I live, and is whinging seeming distressed when I've been there the three times this week. My work have been very supportive but I work f/t and am struggling. I want to be at the hospital to quiz Doctors and to get her home once she's well enough. I've been fighting for my Mum since 2011 when she was diagosed with early onset, and she moved to the great place in 2012.
It's all so sad. She was such an independent woman who brought me up as a single parent, with help from my Grandad. It wasn't all plain sailing by any means, but she's my Mum and I want what's best for her. Crying now as feel so sorry for her, for this situation, and if I guess the best move and it's not what she'd want.