Hello lovely mumsnetters
I posted here about a month ago, about my poor sister who had brain surgery late June, which didn't go well, and here I am with another question..
My sister was recently sent to a neurological rehabilitation facility - she was there 24 hours and fell twice, the second time knocking herself unconscious with memory loss. A&E sent her back to the neurosurgical ward she was in before, where she is still and they're talking about sending her back to rehab tomorrow. I think I'm going to have to have a word about leaving her to cope and do things alone - I know this is probably usually their MO but I feel it's not appropriate at the moment. But I might be wrong.
All I know is that because of incontinence issues, she has very little time between realising she needs the toilet and the deed itself, and my feeling is they don't answer the bell very promptly and she tries to do it herself. She can mobilise with another person and a Zimmer frame, but it's precarious.
Also - the SLTs have not been able to come up with much to help her communicate. She's deaf now as well - I take her A4 lined books in which we have written conversations. She's been given a small whiteboard and a magic marker which she uses to communicate with the nurses. She saw an ENT consultant recently who wants (a bit too keen I'm thinking) to carry out a laryngectomy because of the risk of aspiration pneumonia. The trouble with this is that she is clinging to the hope that her throat function might improve over time and allow her to breathe, speak and eat normally again.
And this is the knotty bit.. If she were to have the laryngectomy, could she eat? Or would the benefit to her just be that she wouldn't be at risk of skin breakdown and pneumonia? (The skin behind the trach always looks a bit grotty to me, but maybe this is normal.)
Her hope is that if she could eat again, she could fix the incontinence - and for background, the incontinence arose when she had a long standing colostomy reversed, and before BT diagnosis she was managing with a low residue diet. She has a bagged feed which is meant to be low residue, but she still has very little and sometimes no warning, particularly at night.
If anyone can shine any light on any of this, I'd be so grateful. My sister has no children and no partner to help her, in fact only a year ago she left an abusive relationship she'd been in for 30 years and came to live with us, so I'm her only champion, and I'm way out of my depth.
Thanks for reading all this