District nurses

[jd58]

we are war with ours.
1. Not giving enough flush with water during lunchtime.
2. No capacity to do morning feeds because they know my family can do it if I was on my own they would find a way. I have my feed at 6 am because my wife leaves for work at 7.45am. Often though my 17yeaf old daughter does it at 8 or 9 before leaving for college.

[matthew55]

Don't get me started 😄

[Ellie]

Are you eligible to get carers in to do your feeds? Or is it only the nurses who do them where you live - or not do them, as it turns out 😠

I wonder if you could get a feeding regimen and a specific amount of fluids 'prescribed' by a Dietitian and they'd have to give you that?

[jd58]

I had carers but District nurses will not train them to do PEG feeds. Got rid of carers when I started on my PEG.

[Ellie]

Would carers do the feeds if they were trained by someone else?

My carers do my meds, flushes and feeds, having been trained by the care agency and Nutricia, my feed supplier (with my input)

[jd58]

Our private carers via our local authority do not do meds or PEG feeds

[Ellie]

Our private carers via our local authority do not do meds or PEG feeds

That's not great, is it.

Hope you find a solution with the District Nurses, and fast. You don't need that stress, nor do you want to be at risk of losing weight or being left short of fluids.

If you have an MND Nurse, see if they could suggest anything.

Good luck x

[jd58]

RESULT. District nurses have agreed to train a carer

[Ellie]

Well done you - what a victory!!!

Now you've to start asking for more than one carer to be trained up to cover illnesses and holidays 😏

Love Ellie.