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Truth About Lewy Bodys dementia

Norrms

Registered User
Feb 19, 2009
5,521
0
Torquay Devon
The Truth about Lewy Body’s dementia
My nights are getting worse, there I have said it. I have waited a couple of weeks in the hope it was just a blip, but no, continuous night after night terrors and hallucinations haunt me. They have also intensified in-depth as I call it and I will not put you through the horror of telling you in detail what I see and hear because I see and hear things no other human being should ever do, the screams the visions, and scenes playing out in front of my eyes every night also haunt me daily and flashbacks can appear in front of my eyes at any time. I dread going to bed, my eyes are heavy and some nights I try to fight it, but to no avail, and as soon as I close my eyes and drift off it’s as if someone has switched the TV on without my permission and forcing me to watch whatever unfolds, no matter how horrific, no matter how bloody and gross it is, I only come round when the devil that is Lewy Bodies lets me, I have no control at all over this.
I have tried many serious and heavy medicines to try and stop this but to no avail. The more serious being very strong to help me sleep but all they do is put me so far under that any chance of waking up to normality is nigh on impossible and no matter how many I have tried, and there have been so many none works. As yet I have yet to hear about medicine that stops you from having Night terrors, nightmares, or dreams. But it’s the tiredness and flashbacks that`s the real killer.


When I was first diagnosed I vowed to learn as much as I could about it, I mean, you wouldn’t go to war without knowing your enemy, would you? And after learning what I have it all starts to fall into place, the reason being, I, like many others will not talk about the night terrors or hallucinations in detail for fear of frightening people to death, so we keep it all in, but with that comes the tiredness. I have found myself rising about 8am but quite capable of falling asleep at noon, and then again about 4pm before being taken to bed anytime between 8pm onwards. Does this explain why so many with dementia start to sleep longer and at unusual times of the day??
Question? How do you cope with this ?????

This is something I am asked many times, and it would be so easy to say because I am a northerner, stubborn, and as singe minded and awkward as they come!!
But my usual answer is…..

“” When I get up in the morning I put my boots on and not my slippers!!!!


But truth be known I would have to say day by day and sometimes hour by hour, some days I ache I am so exhausted, some days not, some days I can put a huge smile on and meet all at the memory Cafe with so much energy and enthusiasm, some days I cannot and on other days I just want to sit in reclining chair and sleep, such is the evil of the beast. Yes, it would have to be taking day by day. I worry about what’s to become of me, I have seen the last stages in so many across the years including within my own family. I am grateful, so grateful I have managed to do what I have for so long, but I would never apologise for it, even though there are times I feel so guilty when I see those much farther down the line than me that have been diagnosed a short time.
So what of the FUTURE??
Honestly?? I have no idea as I have always believed no one can predict what’s to come, and if I had any advice to anybody just diagnosed, it would be to learn all you can about it, it has put my mind at rest so many times, and take every day as a bonus, life is for living, it’s not a rehearsal and you only get one go at it so enjoy I whilst you can.
Norrms Mc Namara
Diagnosed with Lewy Body’s Type Dementia 10 years ago
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,208
0
High Peak
Oh @Norrms, my heart goes out to you.

It is sobering to read of your night terrors, the worst part being that there are no meds to help you - I am so sorry.

Please continue to post when you can - your input gives us a unique insight into dementia.

Take care...
 

JHA

Registered User
Aug 7, 2021
631
0
Thank you so much for sharing this. My mom was diagnosed in July of last year and I had very little insight into what she is going through.

I admire you and I am sorry that there is little to help you and others with this horrific condition.
 

Moggymad

Registered User
May 12, 2017
980
0
Hi Normms I’m always interested to read your posts, you do give very valuable insight into your particular world. Like others i am truly sorry for your horrific dreams.
With a partner ( no dementia I hope) who suffers occasional night terrors my heart goes out to you. In his terror he is aware of sleep paralysis & in a mumbled frantic sounding voice is shouting to be woken up. His terror dreams are usually the same recurring nightmare. If woken he usually manages to go back to normal sleep & often cannot recall he had a disturbed night. I on the other hand do!
As you feel unable to burden anyone with the details of your dreams do you think it would help to write the details in a journal? You probably suffer sleep deprivation as you are not having the restorative deep sleep so important for us. It would be interesting if a sleep clinic could investigate this.
Thinking of you @Norrms & like others am sorry I feel powerless to help you x
 

Scarlet Lady

Registered User
Apr 6, 2021
213
0
Hello, @Norrms . Thank you for sharing your innermost thoughts and terrors and being so brave to do so. While I don’t (as far as I know) have a dementia condition, I do, and always have, suffered from dreams that are certainly disturbing, if not necessarily horrifying. I understand what it is to wake up and not really know if this is real life or not; that stomach churning while you fight your way back to reality. I don’t have an answer, I’m afraid, but I truly hope you find one. Take care.
 

Happy Hampton

Registered User
Feb 22, 2022
96
0
The Truth about Lewy Body’s dementia
My nights are getting worse, there I have said it. I have waited a couple of weeks in the hope it was just a blip, but no, continuous night after night terrors and hallucinations haunt me. They have also intensified in-depth as I call it and I will not put you through the horror of telling you in detail what I see and hear because I see and hear things no other human being should ever do, the screams the visions, and scenes playing out in front of my eyes every night also haunt me daily and flashbacks can appear in front of my eyes at any time. I dread going to bed, my eyes are heavy and some nights I try to fight it, but to no avail, and as soon as I close my eyes and drift off it’s as if someone has switched the TV on without my permission and forcing me to watch whatever unfolds, no matter how horrific, no matter how bloody and gross it is, I only come round when the devil that is Lewy Bodies lets me, I have no control at all over this.
I have tried many serious and heavy medicines to try and stop this but to no avail. The more serious being very strong to help me sleep but all they do is put me so far under that any chance of waking up to normality is nigh on impossible and no matter how many I have tried, and there have been so many none works. As yet I have yet to hear about medicine that stops you from having Night terrors, nightmares, or dreams. But it’s the tiredness and flashbacks that`s the real killer.


When I was first diagnosed I vowed to learn as much as I could about it, I mean, you wouldn’t go to war without knowing your enemy, would you? And after learning what I have it all starts to fall into place, the reason being, I, like many others will not talk about the night terrors or hallucinations in detail for fear of frightening people to death, so we keep it all in, but with that comes the tiredness. I have found myself rising about 8am but quite capable of falling asleep at noon, and then again about 4pm before being taken to bed anytime between 8pm onwards. Does this explain why so many with dementia start to sleep longer and at unusual times of the day??
Question? How do you cope with this ?????

This is something I am asked many times, and it would be so easy to say because I am a northerner, stubborn, and as singe minded and awkward as they come!!
But my usual answer is…..

“” When I get up in the morning I put my boots on and not my slippers!!!!


But truth be known I would have to say day by day and sometimes hour by hour, some days I ache I am so exhausted, some days not, some days I can put a huge smile on and meet all at the memory Cafe with so much energy and enthusiasm, some days I cannot and on other days I just want to sit in reclining chair and sleep, such is the evil of the beast. Yes, it would have to be taking day by day. I worry about what’s to become of me, I have seen the last stages in so many across the years including within my own family. I am grateful, so grateful I have managed to do what I have for so long, but I would never apologise for it, even though there are times I feel so guilty when I see those much farther down the line than me that have been diagnosed a short time.
So what of the FUTURE??
Honestly?? I have no idea as I have always believed no one can predict what’s to come, and if I had any advice to anybody just diagnosed, it would be to learn all you can about it, it has put my mind at rest so many times, and take every day as a bonus, life is for living, it’s not a rehearsal and you only get one go at it so enjoy I whilst you can.
Norrms Mc Namara
Diagnosed with Lewy Body’s Type Dementia 10 years ago
I’m just getting into the hallucinations, night terrors, terrible night sweats and hearing things. I couldn’t describe the hallucinations if I wanted. It’s not something people can understand unless they’ve been through it. Luckily, I’m under the care of a psychiatrist and she is very understanding. I can talk to her easier. She then gives me something to help with sleep or agitation, etc. I often sleep in what I call chunks. 4 hours asleep then 12 up. God bless you. Hugs. ❤️
 

Norrms

Registered User
Feb 19, 2009
5,521
0
Torquay Devon
I’m just getting into the hallucinations, night terrors, terrible night sweats and hearing things. I couldn’t describe the hallucinations if I wanted. It’s not something people can understand unless they’ve been through it. Luckily, I’m under the care of a psychiatrist and she is very understanding. I can talk to her easier. She then gives me something to help with sleep or agitation, etc. I often sleep in what I call chunks. 4 hours asleep then 12 up. God bless you. Hugs. ❤️
and you xx