Medication/Decision Making

HI

I hope today has been easier and that you've managed to speak to your mum's GP or CNS again.

I'm not  a medical professional, I'm just going through the same journey you are, but I'd strongly advise reaching out again to the CNS or GP. I had a similar situation back at the start of our journey when my husband confessed to binning his steroids instead of taking them. I was advised to put it in an email to the CNS that I felt  that his actions were putting him in danger - that way they had to acknowledge that an issue had been called out. She spoke to me a day or two later - and then tore  strip off him at his next appointment for binning the drugs instead of taking them.

The only experience I have with Gabapentin is with my dad. It's a nasty drug in my humble opinion. it turned him into a different person- a nasty, spiteful person who said such hurtful things. My mum eventually spoke to his GP and they changed his medication. 

if you've not managed to reach out, please give the helpline  a call or reach out via the Ask an Expert on here as you need to get support to resolve this for your sake as well as your mum's.

Sorry I can't be of more help here.

Sending you love and light and hugs, Deep breaths. You will get through this. We all will.

Wee Me xx

Apologies for the delay reply- I can relate to what you are saying. Does your mum have a social worker assigned at all? They could maybe get you some additional support. It's so hard to know who you should be speaking to for what, so when I was really struggling, I just badgered everyone! How are thing now? Any improvement? X

Just stumbled upon this thread and wanted to offer some help. It sounds like you're going through a tough time with your mum's medication situation. One thing that might be helpful is to make a list of all the medications your mum is taking, with the dosage and schedule. That way, everyone involved is on the same page and there's less room for confusion. Also, have you ever thought about using a coin flip or dice roll to make some decisions? It might make the process a bit more lighthearted and take some of the pressure off. I hope things get better soon and don't hesitate to reach out if you need any more support.

Hi,

I could've written the copy of this story, I had to do a double take to make sure I hadn't. We had a horrible time with this, mum was put onto TMZ but was forgetting it one day, double taking it the next telling us she hadn't taken it. The consultant eventually took her off of TMZ after the 3 weeks of radio (reduced from 6)

Our GP also diagnosed shingles, which eventually turned out to be a skin infection and needed weeks of anti bionics to treat, she then got oral thrush due to the anti biotics and needed treatment for that. At the same time we were also referred to the gold standards framework under amber with no discussion. What we found that meant was mum was assigned a GP who would check in on her more regularly than usual. They now come every week just to check in. 

I phoned everyone almost daily, the district nurse, CNS, consultant etc I felt that no one believed me and that I was going crazy. They eventually organised a medical capacity assessment and ascertained that she had fluctuating capacity (some times and days were better than others) the gp we were assigned was next to useless. He told her she was in remission and fixed basically. This made our job even harder! After months of me complaining about this we now have a new GP who is much better but mum hates him because he's doing a proper job and forcing her to talk about things she doesn't necessarily want to.

By far, I've found directly contacting the consultant or the CNS the best route. They understand that this is a "thing" and they see it alot. Mum was given morphine by the community nurse after previously refusing it and then took the whole bottle in a matter of days - so they took that away. Basically what's happened is the medical team have removed anything that could potentially cause overdose etc etc. 

Please don't think you are crazy, you know the best, keep fighting them for it. It's so very frustrating. Also, regarding the framework we were referred at Christmas and still going much to everyone's suprise, but it has given us extra support from the gp if needed. I think alot of the haze was caused by radio and chemo if I'm honest, mum appears to be managing her meds alot better than previously. 

Take care xx

I definitely just responded to myself! Thankfully we are in a much better position!