Hi again everyone,
Sorry for not adding a response sooner, it’s crazy how fast time appears to be going at the moment when I am doing so very little but sitting at my mom’s bedside most of the time.
Since this all happened on 13th December it has been the fastest but slowest time of my life - which I know makes zero sense.
An update on mom. things have been very up and down. I’ve clung on to every slight positive, when there has been a definite recognition shown by her, or a sound that really does sound like a yes or a no. Sometimes she is more compliant than at others, I think we’ve gone through quite a rough week, at times I think she hates me being there, I understand, i imagine she feels depressed and sad at times, at times she won’t let me attempt to feed her (She can only have thickened yoghurts at the moment) but will sometimes let the nurses and csws etc
Sometimes it feels you take one step forward and 2 steps back - i know everyone here will understand this.
I have been frustrated that some times the basics are not being followed by the nurses etc for example, SALT making a recommendation that my mom should have some thickened water ‘as therapy’ a few times a day to promote swallowing a couple of weeks into her hospital admittance, but this didn’t happen other than by me, and so, perhaps inevitably, when she was next assessed by salt she hadn’t progressed and it was felt too dangerous so back to NBM. They also weren’t keeping on top of oral hygiene and so she ended up getting an infection of her salivary glands, causing one side of her face to swell and be really painful for her. I get sick of raising issues because I don’t want to be seen as one of ‘those’ relatives and for this to then have an impact on her care ( I have no reason to suggest it would but it’s just another thing I worry about) .
For what feels like weeks I have been asking them to review the type of NG feed she is having as it seems to be causing her chronic pain in her abdomen/stomach/bowels, constipation and then runny stools, I tell them she has always had gastro issues prior to any of this, and she also has IBS, plus other bowel/intestinal issues. I feel like I’m annoying people but as my mom is incapable of speaking it’s my role to speak for her.
She has struggled with the NG - she’s pulled about 5 or 6 out - although I don’t think it’s been intentional, e.g that she is demonstrating a wish to not have it in, it’s more that she is in so much discomfort/pain from the stomach area that’s she’s agitated and frustrated and it just gets in her way.
As we are now at around 5 weeks they are now considering next steps - e.g PEG - we have a Best Interests meeting with them next week to discuss this more. This is because although she may be able to understand what is being said to her, and I think at times she can and is understanding us and the staff, she has no way of giving consent or agreement.
If anyone on here has experience of PEG feeding/the process as a survivor or a family member I would appreciate hearing from you - I know there are lots of risks, aspiration pneumonia being the biggest risk, but any other info would be great.
I hate her having the NG well rather going through the process of having it inserted - on a couple of occasions I have been present to hold her hand - but it’s been horrific and traumatic for us both! She now reluctant to have me hold her hand and I think this is why - she’s associating it with this horrible experience.
One thing (another thing!) I am frustrated about which I will bring up at the BI meeting is that I don’t think there have been enough attempts to try to feed her/test her swallow, either with the yoghurt or other puréed foods and drinks - yes I know I have to trust they know what they are doing, but she’s only been visited by a SALT around 4 or 5 times and it’s not consistent and as said when they have made some recommendations - such as with the thickened water these haven’t been followed by nursing staff. Is this the norm or are we just unlucky that she is at a particularly bad understaffed under resourced hospital? There was a big gap over the Xmas and new year period which was to be expected but I would’ve thought a couple times per week would be a minimum - but here it’s once a week if we’re lucky. Dunno - maybe this is the norm.
Sorry this is really long and rambling - I’m just spewing my thoughts out!
In terms of the stroke - her obs seems stable - well, they have certainly reduced the the amount of times they are taking the obs and they have taken her off oxygen - so again that is a positive, there is no change in her movement, eg still paralysed on the right side, although there are some spontaneous movements noted. And at times she seems much more alert.
Thanks to anyone who has read or made sense of anything I’ve written here!
Amie x
