Hi everyone, I’m new to this, though I have been the carer for my wife for getting on for 20 years now.
I’m increasingly finding that I seem to be spending huge amounts of time fighting, what I think are, needless battles - to give but one example: my wife was having recurring bladder spasms and expelling catheters at a fair old rate. At one time we got through 3 in 24 hours. The neuro-rehab nurse suggested that Oxybutanin would help and sent a letter to our GP requesting a prescription.
I duly collected said prescription and then found out that it was in tablet form - the problem being that my wife is now PEG fed (a tube straight into the stomach as she has lost the ability to chew and swallow) So I asked the GP for it in liquid form. I was told no, it’s too expensive you’ll have to crush the tablets and get them down the tube. Anyone who is aware of PEG tubes will know that the diameter is only a couple of mm - so that’s quite a job.
Eventually after several weeks of phoning round, trying various helpers within the NHS, I was told to talk to the Enteral Feeding team - as it is they who have most control over what goes down these tubes. So I did and the next day got a call from the GP to say that I could have patches. WHY oh WHY did they not offer those before I’d torn out the majority of what little hair I do have left - Is this just me or does anyone else have similar problems? All I wanted was medication in an appropriate form.