Hi EMG - Having read your post and then having had a chance to think about what you said a bit more, I wonder if we might be missing a trick here.
Your Mum and my Mum have some commonalities and so I am very surprised that your Mum is experiencing these troubles, and they are being attributed to the PEG. It may well be the case that this is so, but I feel that we might be overlooking a few things.
My surprise stems from your previous update not so long ago when you informed us you had had some positive meetings with the stroke consultant and put them right about some of the things they had missed etc. You also informed us there was to be a follow-up consultation and review of the care plan etc. and all that was so very positive and encouraging. I was very pleased and excited at that point.
Your Mum is very strong and is doing very well aside from the infections. As I understand it, her overall stroke recovery has progressed well and her strength have improved significantly. This was expected to continue and with physio Mum would stand up and walk etc. To facilitate this, you have engaged private services to give Mum the best chance and the physio has been going very well.
I wonder if it has been going too well 
What I mean by that, is Mum may be doing [being asked to do] too much? Is it possible in the excitement of things picking up post the review with the consultant that the physio activity is a bit too intense for Mum?
We forget that she is elderly and may need more time to recover from intense activity or indeed any activity.
Recently there has been much talk on this forum about Fatigue and how it affects stroke survivors. I just wonder if this is the case with your Mum. Maybe she needs more rest time in between the physio sessions - there is no need to rush things, slow and steady is probably best. I say this because I remember when we were in a similar position and we were trying to get mu Mum to stand up. We did exactly what I am suggesting you [your Mum] might be doing and she (my Mum) was not having it. Mum is very clear about what is good for her and when we do things she is not happy with, she lets us know in no uncertain terms. So we had to step back, give her more time and when she was ready we resumed.
I could be wrong, but is it possible your Mum is working hard to please you and not remembering that it is her who has to decide how much and how far to go? Will she say stop! if she has had enough? My Mum will shout the house down
One other thing which might also be a factor.
The Immune System - Her immune system may be being overworked and hence the infections?
I am thinking diet - with her being PEG fed, is she getting all the vitamins and minerals needed for a good healthy immune system?
We have had to give Mum probiotics (actimel) to help improve her gut health and adding probiotics made a big difference. Also multi-vitamins (Forceval).
Mum’s dietician has been fantastic and has made a huge contribution to Mum’s care especially with the challenges of being on a PEG feed.
Maybe you have already considered these things but if not, might be worth exploring.
We are on our own here - ageism has been against us all the way but we have done well. I don’t want to be overly optimistic or give you false hope, but I really am surprised by what has happened to your Mum and perhaps what I am suggesting may get her back on track.
In summary, things to consider:
- Fatigue - check with Mum - work at her pace. Let her recharge. Slow and steady works best
- Diet - check Mum is getting all the nutrients and minerals she needs. (We get Mum’s bloods checked regularly - every three months). Probiotics and multi-vitamins (must be PEG compatible)
- Remember to challenge the healthcare professionals - ask why?. Why are you taking Mum off that medication? Why are you putting her on this medication? You know from experience, you and your Mum know what’s best for you and what works for you. The others are just (no disrespect) there to help. In reality they don’t want to do much as this is outside their comfort zone. They do not know how to care for someone on Mum’s condition.
- Use (and insist on use of) PPE - nobody goes near Mum without face mask, gloves, protective shoe covers and aprons as appropriate. Sorry, but the viruses are still out there and we are not going to risk exposing Mum to them if we can avoid it and we can
That’s pretty much it.
I really think your Mum’s infections can be managed. I hope I am not being too optimistic.
Both your Mum and my Mum are technically in palliative care, but we both know that in reality they are in DIY rehab do we not?
Wishing you and Mum all the best.
With love and hugs from my Mum.
Namaste|
