Is there anybody out there!!!!!!!

Discussion in 'I have dementia' started by 53sharon, Aug 4, 2015.

  1. 53sharon

    53sharon Registered User

    Jan 14, 2013
    21
    Hello I have mixed dementia. Vascular and Lewy body dementia with Parkinson symptoms. What I'm finding hard is the nightmares day and night and my Doctor told me there to do with my Lewy Body. Is there anyone's out there that suffers with them?
    Is there a way to deal with them?

    Thank you for looking at my post.

    Sharon x.
     
  2. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,035

    Hi Sharon

    Welcome to TP sorry to read about your symptoms. I have nightmares during my bad phases, I sometimes get some respite from them and then am very glad.

    I find if I am struggling to sleep if I eat a banana or something it seems to help. Nothing external helps with them though.

    I hope you will get some other replies, I'm sure you will. Keep posting
    Best wishes
    Sue

    Sorry just realised you're not new to TP, sorry.
     
  3. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    Hi Sharon

    I also have mixed dementia (Alzheimer’s, LBD, and Parkinson’s disease) now for the past (Ten and a half years) so I can understand your question and concerns, unfortunately your doctor is right the nightmares are most likely caused by your LBD although Alzheimer’s can also cause the same thing, I often have Nightmares and Hallucinations which then causes me insomnia so I end up with many a restless night, if this happens what my dear wife makes me do ‘after waking me up’ is to make me drink some water and then quiet often I will get back to sleep again ‘But’ then sometimes only to have yet more nightmares again, in which case I will get up nod try to relax in the armchair with a cup of hot chocolate drink which then helps to make me drowsy, apart from that if the nightmares are causing you a lot of anxiety and sleepless nights then your doctor could prescribe you a medication to try and lessen the nightmares although I don’t take medication for my nightmares I just try to fight them off myself

    Best of luck
    Barry
     
  4. 53sharon

    53sharon Registered User

    Jan 14, 2013
    21
    Hello Sue I though only kids got nightmares haha. I haven't had any nightmares since I was little. They are so horrendous. But yer your right when im having good times I don't seem to have any nightmares. But when im going through a bad time they are worse sometime I feel to scared to go to bed. I also see things sometimes different to other people. Which can be scary sometime. Some of the family are not as understanding as id like them to be. But i have to look at it the other way. There are people much worse off. I think im going to try and take up reading again. I do hope your going through a good time at the moment. Thank you for replying.

    Shaz x.
     
  5. 53sharon

    53sharon Registered User

    Jan 14, 2013
    21
    Hello Barry thank you for replying. I don't really want to take anything for my nightmares. I also have Hallucinations. Iv even made my Husband stop to help an injured animal which turned out to be a sign post. I'm going to try and take up reading again but I don't seem to be able to get in to a book or film any more. I spoke to someone called Sue and when I though about it she's right when I'm having good times I don't seem to have the nightmares. I get hand and arm tremmers now and again. Now my legs have started going stiff and hard when I try and walk but not all the time. Do you suffer from Parkinson symptoms every day? I think I'm having a good day today so I hope I'm going to have a good night. Hope you and your family are ok. Thank you for replying.



    Sharon.
     
  6. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,035
    Hi Shaz

    I could have written that:) I have thought lately of trying reading again but it has to be something short and something without a plot line, I'd never get to the end as I'd keep losing the plot:D;) literally!

    Good to see you posting.
    Love
    Suex
     
  7. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    Hi Sharon and thank you for your reply, Yes Now after ten and a half years of living with my dementia illnesses and despite my medications I do tend to get a lot of agitation and stiffness in my legs and joints and have problems with my balance and walking, also I do get arm and hand tremors and especial towards the end of the day about 4-5pm when the sun is setting which is most likely due to Sun-downing so yes I do suffer from my Parkinson's symptoms almost everyday, but I just keep fighting against it

    Best wishes to you and yours
    Barry
     
  8. 53sharon

    53sharon Registered User

    Jan 14, 2013
    21
    Hello Sue I'v differentially lost the plot years ago. I put it down to having children ahah. Then my doctor said it was Dementia :). One of my daughters Shaunna help me quite a bit at home which is lucky. Do you have someone who helps you when you need it at home? Hope to talk to you again soon. Look after yourself.

    Shaz x.
     
  9. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,992
    Suffolk
    When OH couldn't cope with the plot line, he turned to short stories. He always liked poetry as well. Worth a try?
     
  10. 53sharon

    53sharon Registered User

    Jan 14, 2013
    21
    Hello Barry my daughter Shaunna told me she thinks I might have Sun-downing but when I spoke to someone else they said they have never heard of it. But between 4-6 pm most days I feel a bit low and not my self at all. You seem a very strong person. I agree with you. You do have to carry on with life the best you can. Lovely talking to you. Hope you and your family are well.


    Shaz x.
     
  11. 53sharon

    53sharon Registered User

    Jan 14, 2013
    21
    Hello Thank you for commenting. I used to like poetry at school. But never though about it since but might give it a go . Thank you x.


    Shaz x.




     
  12. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    Hi Sharon,
    A lot of people don't understand about Sun-downing which can cause some people with dementia a lot of anxiety at the end of the day although Sun-downing can stick a person at any time of the day but most prominently its the latter end as the Sun is descending over the horizon.

    Here is something that i wrote about how Sun-downing effects me which is also posted on the section of Talking point, it might help you and maybe others to understand it better...


    “How Sundowning affects me”

    Some time ago on ‘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?)

    Well as there were so many ‘New Members’ I thought it might be a good idea to post the thread again for easier reading rather than searching as sometimes new comers want answers immediately…


    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.

    Please feel free to copy this to your friends or on your own Blog sites as it might help other people to better understand how Sundowning can affect a person who has any type of dementia...

    Barry,
    Living in Indonesia with mixed dementia, (Alzheimer’s LBD and Parkinson’s disease)
     
  13. 53sharon

    53sharon Registered User

    Jan 14, 2013
    21
    Hi Barry Thank you so so much for putting that on here. Most of that I could of wrote myself but I dident think anyone would understand and though I was going crazy. Iv just finished cry my self for no reason at all. It was so nice for someone to understand how I felt and have experinced it there self. You have a fantasic wife. I wish my husband understood more but he has his own health problems. I will be showing some of my family what you have written so they know its not in my head. Thank you once again. Love to you and your wife.

    Sharon x.
     
  14. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    You are welcome Sharon as we are all in the same boat and on Talking Point to hep each other;)
    Best wishes
    Barry
     

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