GetHealthHelp

A Patient Advocate's View

You are not alone. Sundowning in the open.

All the caregiving professionals I know in New York have been very busy with people calling 911 only to find out that they are having some kind of panic attack or being returned home without a diagnosis.  Caregivers tell me that they can’t believe how nasty their patients have become or how needy. Is it the long winter or is it something more?  Here, Barry Pankhurst offered to allow us to reprint his article about how it feels to him when the effect known as Sundowning comes on.

I can’t tell you how many of my clients are relieved when I mention that they may be suffering from Sundowning. They thought it was something that was only happening to them or that they must have cancer or a heart attack coming on.  Barry accepts his Sundowning as being related to his dementia, but many of my clients don’t have any other symptoms of dementia or Alzheimer’s, they just go through the Sundowning. One lady, who is now in a psychiatric unit of a nursing home, says she feels like she is on fire. The next day she will say that she and everything around her is wet. She is inconsolable, which led to her requiring restraints.

Another client has almost the same symptoms as Barry, but they happen only in the morning. I have a very hard time explaining it to his psychiatrist who only sees him in the middle of the day when he’s at his best and has forgotten the recurring nature of his symptoms. Doctors rarely if ever discuss Sundowning with patients or caregivers, the most I’ve seen is a shake of the head.

Thank you Barry, for sharing this and for being so painfully honest.

Faces of Dementia

 By Barry Pankhurst   How Sundowning affects me

Some time ago on another website called ‘Talking Point’ I was asked the following question and I quote:

(Barry could you explain how you feel whilst Sundowning, does anything trigger it or does it just happen like clockwork?) 

The easy answer would have been to just to say yes (It happens like clockwork) but I think the subject is far more complex than that as it seems that Sundowning as it’s called can affect people with our illness at different times of the day, “in fact” a similar thing can also happen at the beginning of the day when the sun is rising, although the latter part of the day when the sun is setting seems to be the most significant time…

One thing I should explain is that here in Indonesia and some other parts of ‘Asia Sun Rise and Sunset’ occurs at about the same time everyday of the year, by 6am its broad daylight and by 6pm it’s getting dark unlike European countries when during the summer you have extended hours of sunlight from 4am-9pm which in itself could have some significance as to when a person starts to feel the effects of Sundowning?

But how does it make me feel: I think the best way I could describe it is to say that it causes a similar feeling that I can still remember after having had a nervous breakdown some years ago that at the time resulted in extremely deep depression.

For me it normally starts at around 3-4pm when I start to feel very lethargic and just seem to be wandering around the house utterly lost in my own world mumbling to myself or sitting in a chair drifting into daydreams (in fact my dear wife Sumi says she can now tell what time of day it is without looking at the clock) I fell as though the end of day is trying to drain every last bit of energy out of my body, all my limbs become extremely weak and I find it very difficult even to go for our walk but still go in a effort to ward off the Sundowning effect, I can become incredibly short tempered and loose all sense of rationality and sometimes become verbally aggressive and argumentative, you feel as though the whole world is against you and that whatever you say or do is wrong so I don’t like to be posed any questions at this time of day not even (what do you want for dinner) and I certainly don’t like to have any visitors at this time not unless they want their heads bitten off as my mind is at a total loss of any comprehension, all I want is to have my dear wife by my side but she now realizes that it’s best to talk to me very soothingly and I’m sure that she now just agrees with everything I say in an effort to keep me calm and also makes sure the house is kept peaceful without any excessive noise to further confuse my mind (Bless her as she has so much patients with me) as I start to feel as though I have the whole weight of the world’s problems upon my shoulders and everything becomes a effort so much so that my wife now has to help me bathe and get dressed as I’m so agitated and shaky…

So there is nothing that actually triggers the Sundowning apart from the setting of the sun as it descends towards the horizon which makes it feel as though its automatically starting by itself, but if it’s not handled with sensitivity then there could be untoward repercussions, also I should add that not everyday is the same as some can be worse than others and sometimes I can go for a few days without feeling any effects of Sundowning and the other strange thing is that even the weather conditions at the end of day can have some influence if its overcast I feel much better and responsive but if it’s a strong bright crimson sunset that we get out here then the draining affect starts much quicker, in fact, I get much the same affect when I go into a shop that has to brighter a neon, or flashing lighting…

Read of the reality when I’m Sundowning

This is written on actuality not supposition from when my dear wife Sumi and I went for our end of day walk it’s not just a one off situation or sensation for me it’s more of an occurrence day after day that totally shatters me!

It was just 4-30pm as the sun starts descending over the horizon when lethargy takes a grasp of me and the Sundowning affect ‘tolls the knell of my end of day’ so I’m writing this down trying to express the depths of my ‘true inner feelings’ at that exact moment in time…

My whole body aches as the muscles try to maintain some equilibrium, and as we go for our walk every faltering step I take being like that of wearing shoes made from concrete that’s slowly setting and intensifying in weight, which makes me weigh heavily on my walking stick and Sumi’s arm otherwise I feel I could just pass out from utter exhaustion as my mind is consumed in a dense obscure cloud of disorientation and bewilderment, my limbs are trembling so much I don’t know what to do with them to ease the tremor… my vision has become blurred as my eyes feel heavy wanting to sleep and escape from the sun’s setting draining sensation, so Sumi tries talking to me to take my mind of the horizon as my eyes have become mesmerized following the sun’s descent and harsh rays… but I can’t comprehend what she’s saying, I try to reply but any form of words and speech are held tight within me so all I do is mumble something incoherent which then makes me frustrated and I become really irritated and tetchy with her, the slightest little noise is more like thunderbolts slamming into my ears and making me very anxious and extremely jumpy…

The further the sun sinks away… the further I go into despair of doom and gloom… and sometimes it gets me to the point of saying to Sumi: (I’ve had enough of this, maybe it would be better if it all ended now, and I did not wake up again) as I can almost sense death waiting round the corner taunting me when in this daily living hell of Sundowning, I can see the tears glistening and running down her cheeks as she holds on more tightly to me saying ‘please don’t speak like that’ but I seem to be oblivious to her own anguish as my whole being is so distraught by the time of day that I just want it to come to an end…

As I said those where my exact feelings made from notes one evening, but as I type them out the next morning I had little recollection of that moment in time… it’s as if it never existed… as this morning I feel a completely different person still full of determination and the spirit of fighting this terrible illness, but when Sundowning strikes it takes us into a completely different world of anxiety within dementia…

I will be very interested to know what others people’s observations are with Sundowning as it’s another part of the illness that doesn’t affect us all in the same way.

http://www.facesofdementia.co.uk/332251467

March 22, 2014 - Posted by | Uncategorized | , , , , , , ,

3 Comments »

  1. Caryn, i can’t ay that its exactly related, but lately i’d been feeling down and out of sorts.
    i’d read about how the shorter days negatively affected some folk, so what i did was purchase high wattage plant lights, the kind used for hydroponics and installed them in every room. i keep them on during my waking hours. i’ve done this for the last 3 months and incredibly enough i haven’t felt this good in a very long time. dunno if its a placebo effect, but it sure works for me. 🙂 any thoughts?

    Liked by 1 person

    Comment by Ed Rosado | March 22, 2014 | Reply

    • Anything that works. “When they say that nothing else can be done, that just means that they don’t know what to do.”

      Liked by 1 person

      Comment by GetHealthHelp | March 22, 2014 | Reply

  2. Really interesting post – even more so given its unique perspective.

    Some people fob off the very idea of there even being such a thing as Sundowning whilst others will give it a gentle wave of acknowledgement but don’t really try to understand how it might feel to experience that level of agitation, frustration or the sense of restlessness / feeling like they should be doing something, somewhere – but not know what – even when they’re visibly exhausted and clearly in need of sleep.

    I imagine it almost like someone trying to fire up the cylinders and get the engine again whenever someone else tries switching off the ignition. That constant fight between the two means the person can’t rest long enough or well enough to settle down and sleep and it can be awful to watch so only knows what’s it’s like for the person concerned to go through.

    As someone else already said, whatever helps and works is absolutely the way forward. Take care 🙂

    Like

    Comment by Auntysocial | March 22, 2014 | Reply


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