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Sundowning - What Is The Definition?

stanleypj

Registered User
Dec 8, 2011
10,710
North West
hi. Im bill baer with me im dislix . My wife has lewy body. She crys most morning for some time . Dose not know whats going on.need to be feed . She has now had lewy body for about 3 to 4 years.and geting worse .took my wife to see metel doc sorry.only to dinoise l/b . Medication she is on .thiamine/velafaxine/vitamin b/aripiprazole/clonazepam/diazepam/ferrous/mirtazapine/rivastigmine/ this dose not mean that its rigth for you mam .but ask about them
Welcome to TP Bill.

Is she on all those medications at the same time?
 

Suzanna1969

Registered User
Mar 28, 2015
346
Essex
Well I took Mum to see the dementia service doctor yesterday and Dad came too, partly because he sees more of her weeping than I do and partly so they can see that, with his Parkinsonism as well as her Dementia, we really need help YESTERDAY and no more fannying about.

The doctor kept us waiting for an HOUR, during which time the receptionist told us with a wry smile that 'he's always running late, he talks too much!' but that he couldn't be interrupted when he was with a patient (I didn't actually ask her to do so, just said that I was concerned about my Dad being stuck in a plastic chair for all that time).

When we finally got to see the (harassed and flapping) doctor I told him, out of Mum and Dad's hearing, that it really wasn't acceptable keeping people of their age and conditions waiting all that time. He did apologise again but so what? Then he sat down and started reading Mum's notes - ah preparation! So to save time and my sanity I gave him a synopsis of things over the last 8 months and explained that I wasn't going to accept any more delays and that we needed some medication pronto. I asked about Fluoxetine but apparently it's not compatible with her other meds so he started her on Mirtazapine, warning us of possible side effects including weight gain from increased appetite and sleepiness.

During our appointment he left the room not once but TWICE after the receptionist (a different one) waved at him frantically through the window. So much for not interrupting him when he's with a patient!!!

Seriously if it weren't for the fact that I knew it would have upset Mum he'd have been on the business end of a Susannah Paddy which ain't a pretty sight.

Anyway she took the first tablet last night, she'll be on a low dose for 3 days then move up to the higher dose. Obviously I wasn't expecting it to work straight away and she was very weepy when she got up BUT she was sound asleep until midday! Dad did say that they went to bed a little later than usual, 11pm, but that she'd also dozed off for 2 hours in the evening.

Despite it being almost lunch time she insisted on having breakfast and, because she eats so slowly these days, was still finishing her porridge at 1.30!

Has anyone got experience of Mirtazapine and did the sleepiness improve over time? Mum and Dad's quality of life is not great at the moment because she's so reluctant to go anywhere and it's not going to improve if she spends most of the day asleep!
 

3grandchildren

Registered User
May 8, 2015
3
Bedtime

I am new to looking after someone with dementia, and wonder sometimes is it me or if my oh is behaving strangely. From a man who's,s mantra was time spent in bed is time wasted, he now goes to bed at nine. Before this he spends time ,with a torch, scanning the garden and every corner of the house.he doesn't know what he is looking for,apart from locking doors and windows. After reading about sun downing I realize that is what is happening , so I can now accept this as the progress of the condition.
 

Marlyn

Registered User
Nov 11, 2012
5
Light Therapy

Hi Suzanne,

I've just read a post re. light therapy use in care homes in America which seems to be helping Alzheimers/dementia sufferers. It's the same machine they use for people suffering from SAD disease and which are now affordable (£35 - £200) so worth a try in my book. I wonder if anyone on this talking point has heard of it or indeed tried it. My Mum cries all the time and nothing makes her happy. She is aware of her loss of memory and is terrified of it getting worse, which of course it will do. She is unable to tolerate medication as she's never been ill in her life before. I also don't think chucking pills at these sufferers is always the answer and it's well worth trying other avenues. I've ordered a light therapy unit and will let you know if it has any bearing on her apparent depression. We live in Scotland so suffice to say we have lots of dull/wet/part dull days.

Mum (80) is having a bad time most mornings. It ranges between being a bit tearful and sobbing inconsolably for hours. It starts when she gets up and is a huge strain on my Dad who is dealing with Vascular Parkinsonism. Occasionally she is right as ninepence but this is rare.

When asked what is wrong she can't respond but, as she has some awareness of what is happening to her, I can only think it's fear (and I can't blame her either) and general confusion. She said to me once between sobs 'I'm going mad aren't I?' It was horrendous.

After reading here I deduced that, despite the timing, her weeping is probably Sundowning. I mentioned it at the Memory Clinic appointment to the Dementia Practitioner who seemed doubtful BUT admitted she is not medically trained (and actually I'm not sure she is actually qualified to do what she is doing as she ran the Cognitive Thinking Course Mum attended last year and admitted that she had been 'shunted' during recent changes) so said she would refer it to the next meeting and request suitable medication.

So does this sound like 'sundowning' to you guys? It's so distressing for my Dad (87) because, like me, he is a very logical person and finds it hard to deal with someone who doesn't respond to logic. I am concerned about the effect on him as it must be so wearing but he won't allow me to stay for any length of time and gets upset if I get there in the early mornings as he feels I should 'have better things to do at your age' (I am 46 next week!) and keeps telling me to go and 'do the things you need to do'.

I do find I can distract her sometimes so that she forgets to cry but could medication help? And can anyone have more advice for this horrible situation?
 

Fife

Registered User
May 21, 2015
5
Aberdeenshire
VaD

It isn't necessarily the case that this kind of behaviour will get worse in the future. People do sometimes become calmer or at least less inclined to become agitated as the condition progresses. Nothing with dementia is completely predictable - except that we know how it ends.
Hi stanleypj,
Thank you for awnsering my question on sundowning, yes you never know what is going to happen day by day you just have to get on with it. My Husband trouble is usually at bedtimes that is how I am glad I am not a heavy sleeper. :)