Hi @Loshy and @MinnieB
Thank you for your comments.
Mum had a severe stroke and at the time, the consultants were not very positive about her chances of recovery and after their initial tests and assessments, to put it bluntly Mum was discharged our (family’s) care and we had minimal support. Covid lock-downs did not help as it meant even less “hands-on” support.
Our GP has not been very supportive and we are always having to go them with “solutions” after doing our research - this forum has helped us, but even with this the GP typically makes referrals which tend to lead to not very much. It’s hugely frustrating.
Wrt to the feeding, Mum has aphasia and poor cogintive skills etc. which gives the impression she is “beyond help” to the “professionals”. On the last visit the GP made, she said “Mum condition is deterioriting or will deteriorate”. This was a shocking comment as we see the opposite i.e. Mum’s condition is improving. The reason why GP and other consultants say things like that is they do not have full visibility of Mum’s conditon and the day-to-day improvements she makes. Because they cannot answer our questions e.g. when I asked about “tingling” in fingers and hands they didn’t know and wanted to put her on pain killers!
Sometimes we have even been asked to “prove” Mum will benefit from something before they will support our request which is most bizarre if you think about it. E.g. when we asked for physiotherapy, we were told to get “private” PT and prove Mum will benefit from it before they will give ongoing rehab support.
Anyway, back to the PEG - due to lack of genuine interest and hiding behind the Covid screen Mum has not been tested to demonstrate her ability to safely swallow food. We see everyday, she is swallowing her spittle and juices that form in her mouth but that is not what is required to get a sign-off. I have asked for a swallow test, but as with most other requests these have not been granted.
We are patiently working towards our goals, but it is taking a long time as everything takes an absloute age to achieve.
So along with the tingling, physio, PEG, drop in sodium levels, UTI’s etc. we just have to come up with solutions. Thankfully, despite the huge barriers in front of her and despite her age (90’s) Mum is determined to move forwards. That is what keeps us going - seeing Mum’s determination not to be beaten into submission.
Thanks for reading and for your responses.
Best wishes to all.