Sorry to be cynical, but the latest [mis] diagnosis is Mum is suffering from “Sundown Syndrome”.
When you have advocates representing you and professionals not willing to look/think outside the bax, this (misdiagnosis) happens more often than not.
There is no dementia, there is no Alzheimer’s, in fact there is no “illness” per se other then the effects of being a stroke survivor (not your average, if there is such a thing), yet because the professionals can’t tick boxes and find answers, they choose the nearest thing and try and “fix” you.
With all results coming back (blood) normal indicating no inflammation, good hydration, good kidney function etc. etc. the one thing that might be the issue is something called the “Sundown syndrome”.
Well to be fair, it is a possibility since Mum is trying to detoxify her body and it may be taking longer than expected.
Just putting this out here in case anyone does actually care for someone who has “Sundown syndrome”.
Is this something the does have actually tried to diagnose your mum with? I can’t say I have heard of it so have had to look it up. Are they saying this is what her episodes of discomfort & crying out are?
You and your family know your mum best so would trust your instincts with her.
Hi Ann - Yes, this is what they (he) is suggesting.
Basically, they are clutching at straws and don’t have a clue. The tests they carry out are “standard” starters for 10 and in Mum’s case, she is medically fit and has no underlying issues that can be picked up in routine testing. All her blood tests come back negative i.e. no problems and her kidney is functioning fine and “for her age” whatever that means everything is hunky dory.
Until and unless someone can speak with her and examine her properly, they will never be able to offer any help.
This GP is one I have the least confidence in as he has been “negative” from the start and I have had a few run-ins with him. They also employ locums who tend to be “rookies” and so all things considered, we now don’t expect any further help from the NHS driven resources including the hospital (sorry to keep repeating, but not all members read all posts and I don’t want them to miss out in case they end up in this situation) has told us not to take her in any more. We will ignore that of course in case when she needs to be examined by specialists.
They keep telling us she has dementia - the only dementia she has/might have is vascular dementia, that caused by the stroke.
I love it when the doctors say everything is normal for your age or based on the medical condition that you have. That to me always reads as the tests aren’t quite normal but given your age and medical condition we’re not bothered about the results. But of course that makes me worry just that little bit more. You’re right to ignore the advice of not taking your mum in to hospital if you feel she needs to be there. You can guarantee the one occasion that you didn’t do it it’s the one occasion she probably did need to be seen and something else entirely is going on. I think you have a good enough handling on the situation that you are both sensible enough to know when she needs some medical intervention and when she doesn’t.
Of course she does ; her connection with nature and her instincts are much stronger than yours or mine.
Patients by the window in hospital recover more quickly
That’s a fascinating and widely observed phenomenon! You’re right, and the research backs it up. The idea that patients with a window view, especially one of nature, recover more quickly and have better outcomes is one of the most robust findings in the field of evidence-based design for healthcare.
It seems like a fairly arbitrary diagnosis, from what I read, sundowning is confusion and restlessness in the late afternoon. I get confusion and restlessness late afternoon because of fatigue and then I have to reset my brain for the evening.
Actually, I suppose it could be called sundowning. By evening I won’t even tackle technological issues with my phone, the computer, the tv controls even, because my brain is too sluggish for anything more complicated than making a cup of tea. My brain just scrambles at any more complex than straight forward.
My speach also starts to slur, word finding/sentence construction becomes more difficult and my foot drops again.
So maybe this sundowning can be applied to more than just dementia/Alzhimers. At the end of the day, our brains are not firing on all four cylinder are they. Because we have some dead brain tissue from our strokes. The rest of the brain is having to work that much harder to compensate where it can. Suffice it to say, it will tire that bit sooner in the day. And depending on how busy, strenuous or exiting your day was, will determine how tired your brain will be in the evening. So by about 4 o’clock the brain is packing up, shutting down it’s computers and readying the place for evening shift
I got a new phone a few days ago and yesterday was the first time using it proper. I also had a hearing test at the hospital and my hearing aids were replaced. Lots of new noises and confusion from new phone and hearing differently plus amplified, ordering taxis, getting a call back from the dentist and not recognising the new ring tone. Not recommended for in a busy hospital reception Had to see dentist in afternoon as it turned out, to replace a filling
By the time I was finished with it all I was no good for nothing. Thankfully it wasn’t my turn to cook last night. Besides, I didn’t want anything more complicated than a bit of tea and toast. So I just sat and played mahjong on my phone for most of the evening.
OK, I don’t get more confused or hyper or anything like that, but the brain’s capacity to cope and manage is reduced. Hence the similarities to sundowning.
You are right and I suppose this could be called Sundowning, but the way the GP explained it to me, leads me to believe that in Mum’s case he is barking up the wrong tree - I nearly said he is barking mad , which of course he is
Whilst there is a small possibility that Mum might be suffering from Sundowning, I rather think think she is the victim of another mishap caused by decisions family took on her behalf as advocates and in the belief that it is in her best interest. Almost certainly, and definitely much more likely than Sundowning, Mum is actually experiencing Acid Reflux and possibly digestive issues.
That said, I might be wrong as in her case, the food is by-passing the stomach and going straight into the duodenum which is the result of the decision taken by the radiologist who was tasked with fixing Mum’s PEG (buried bumper) issue back in 2023. At the time that was a huge relief for us as we were looking at “starving” Mum to death as she is nil-by-mouth and the PEG was non-functional meaning there was no way to feed or hydrate her (other than IV - for hydration).
So we are targeting the acid reflux angle and to that end the PPI (Proton Pump Inhibitor) omeprazole is back on the prescription items list. Mum’s drug free adventure was short-lived
Still as young Roberto says, “Onwards and upwards!”
Had to see dentist in afternoon as it turned out, to replace a filling 
(arbitrary/mis-diagnosis).
, which of course he is